Neuroimmune from the Inside Out {EP 98}

Ed Gobbel: Hello, thanks, thanks for welcoming me even though I live here. Just glad to be here [laughter] with you today, in my studio for a change.

Robyn: We are always here together.

Ed: Every day!

Robyn: Every day!

Ed: Every day.

Robyn: Well, today's episode is the second episode in a three part series on neuro immune disorders. So last week, I interviewed Dr. Javed, from Austin. He is part of the Governor's Advisory Council for Pediatric Acute Onset neuro psychiatric disorders. Yeah, exactly. It's a mouthful. PANS.

Ed: Yes, we know that [indistinguishable].

Robyn: Pediatric Onset Neuropsychiatric Syndrome. I wanted to bring parents of the children who have these big, baffling behaviors and really vulnerable nervous systems. What I thought could be really helpful in this series was to bring the voice of a grown up with a neuro immune disorder. When I was a practicing therapist, I saw kids and adults, about half and half. And I always thought it was really helpful to work with adults who could articulate verbally what I was often seeing in the kids through their behaviors or through, sometimes just their nonverbal expressions in their play. Adults could give words to these experiences that's happening inside their own inner world that kids are having a harder time, you know, putting into verbal language. And that's what I hoped we would do today. That for the parents who are caring for these kids with confusing and out of control behaviors, kind of, regardless of like the origins of the nervous system vulnerability, but to give voice to what kids have such a hard time articulating by inviting somebody on the show who has a neuro immune disorder. 

Ed: That's me, I guess. 

Robyn: That's you.

Ed: Right, right. Right. Right. Right. I've got-I guess we haven't talked about it. I've got Lyme disease that I probably carried for most of my life. I can remember being bitten by a tick when I was 17, or 18. And I don't know if it happened before that also-. But it's funny, you're talking about words and putting- putting words to thoughts and feelings because one of the biggest things that goes wrong in my head even now is words. The words getting jumbled, me searching for words, me mispronouncing, me pig latin-ing by accident all the time. When my brain is spinning, and I'm trying to talk and be cohesive.

Robyn: Yes. [laughter] It happens. Yes.

Ed: Yes. Yes. Yes.

Robyn: This is interesting. I think we should just give words to the fact that I've never interviewed somebody in person before. 

Ed: When you're looking at them?

Robyn: Yeah, like you're just sitting right here. Like you're realizing we’re not on Zoom.

Ed: Yeah, I touched her with my foot. 

Robyn: [laughter] Yes. 

Ed: If you're- if you're listening.

Robyn: So last week, Dr. Javed, talked about how even in the name of PANS, it's this acute- he idea of having this acute onset. And if y'all are listening, and you didn't catch last week's episode, you don't- you're unfamiliar with just even the idea of neuro immune disorders, definitely jump back and listen to that. He was an amazing guest. But the acute part and people believing that, you know, neuro immune disorder comes with this acute, abrupt change in behavior, I think, is something we can chat about. And it's probably a really good place to start because there was ways in which that was true for you. That it was all of a sudden, it was like, holy moly, like something is really wrong. But then there's ways in which it wasn't acute, right? Like there had been decades 

Ed: Right, right, right. I mean, it's easy to- it's easy to only see the acute moment. It's when when- when the dumpster finally flares up and the fire starts and then you tend to forget about all the other stuff. We were even talking earlier today and you reminded me of a time- a break that I had 12 years ago- 13 years ago almost that I had completely forgotten. But it's really similar to the some of the things that I'm experiencing now. So, my whole life, I've had some of these issues, getting stuck in feelings, sudden, uncontrollable rages issues. Where I'm acting, before I even realize that I'm having that feeling. And my depression I've had most of my life, but it's only with hindsight that I can see it creeping up on me. So I think it's easy to forget about it. And just think that it was acute when really, if you really, you know, look in the rearview mirror. And you can see all kinds of- all kinds of ways that it was screaming ‘look at me’ before that I just missed or thought my, you know, thought my Prozac was taken care of, you know? I think Prozac bandaid that I had for 20 years was maybe something I needed to pay attention to all that time ago.

Robyn: Yeah, I mean, for 20 years, which is- we've been married for 18, and together for 22, or something. So for all my whole time I've known you. It's just been this chronic depression with some ups and downs. And I can remember, even as we were getting ready to leave Texas saying like, I think we can probably pursue better psychiatric care, like we can have higher expectations for how like mental health care helps you and helps you feel better. So yes, in many ways, this was not acute. And I know that that's so true of so many of my listeners that it doesn't feel acute. There's the sense of like, we've been dealing with this for a long time, and hard to even consider like when did it start? It feels like it's always been there. So I think one of the things I want to toss out there is that acute doesn't mean it just started, you know, two weeks ago, and there was this huge thing. Acute could mean that it started a long, long time ago, you didn't really even kind of notice it, you chalked it up to something else, especially in the parents- parents of kids with a really significant complex trauma, as trauma informed care is really progressed. And we see these kids have these really baffling behaviors. And we just attribute it to their history of trauma, without digging a little bit deeper to see like, is there anything else going on? And all of a sudden, it's been years, and years, and years, and years without a whole- without a lot of progress. And I think that's when a lot of families are going is there something-  is there something else going on? Which is- kind of what we did.

Ed: Yeah, it just makes me think of the fact that when children have these bad behaviors, it's a whole different thing than when an adult does. Because it's way easier to look at me losing my mind and doing something completely out of character for me, and going oh, wait, maybe there's something wrong there. And when a kid does it, it's a lot easier to be like, oh, they're just they're just acting horrible, like you're always talking about.

Robyn: Yeah, absolutely. I think yes and no. I mean, that's something I'm gonna do a third episode in the series, just kind of talking about my own experience as a caregiver. Because even though I know so much, it's really easy. It's easy sometimes to kind of forget, like in tuned to be like, Oh, my gosh, he's just a jerk.

Ed: And good days, my good days, right? Because I'm not in an obvious crisis moment. It's you tend to forget that there's a crisis going on inside that you don't see.

Robyn: Absolutely. Absolutely. And I think to just pause and really catch what you just said, which is, because parents say this too. Like when their kids are really out of control, it's almost a little easier, because it does feel so clear. Like, oh, something's really really wrong here. But when that deescalates a little bit, and it isn't just really, really wrong here behavior, but it's just sort of like- like, difficult behavior, oppositional behavior, super uncooperative behavior. And these kids kid-, they're just, they're not very nice. They're confusing. You look at them. You're like, what on earth? Why are you acting this way? I think that's when like as the caregiver, it can get a little more challenging to remember like, oh, no, there's still something really wrong happening on the inside. This isn't a behavior problem or character.

Ed: Yeah, my wild horses. It's my wild horses all the time. Even when I'm presenting completely normal for the outside world, like I am constantly, constantly, I've gotten horses, they're not even a tame team. They're wild horses with ropes around their neck, and I've got 15 of them in my hands and I'm constantly trying to hold those back from just dragging me through the mud. And sometimes I lose control of that and-, but that's really what it feels like in those moments. So I guess I never really thought about that right? Looking at a kid and even when they're doing well, like they're probably trying their best inside to keep their horses from dragging them through the mud too. The credit- they'd probably don't get credit that- I don't feel like I ever get. But I know I get a lot of credit. [laughter]

Robyn: Well, yeah, yes or no probably sometimes you don't. Because we just like their families listening, we just get- we just start doing life. Like this is just one part of our life we have a lot of life to do every single day and so do these- these families. And so it is easy to forget, like how hard this person is working or what that exhaustion is. And then the exhaustion creates a new level of stress and the nervous system and then-.

Ed: Yeah, yeah. For me, the stress is ‘oh, no, it's happening again. Oh, no, I'm losing control again. Oh, no, I'm stuck in this feeling again, I can't get out’. And the harder I try to get out, the more desperate I get. And the more desperate I get, the more it pushes the people around me away. And the more desperate I get then, and then desperation turns into panic. And then I'm stuck in it and I can't get out. And I have to find a way to deescalate and find a way to get back underneath my constant flight- fight- flight. See, there's my- my words are getting jumbled there even. So-.

Robyn: I mean, when I think back on, just- not just the last few years, but having obviously been together for so so long as both of us work really hard on our mental health. Like we both do lots and lots of therapy, we have lots of coping skills, we have lots of-

Ed: Oh yeah, I love therapy. 

Robyn: No, you don't! I love therapy. [laughter] But despite not loving therapy, or good at participating, and working really hard in therapy. And that's not the only thing you work really hard at. And I think about that a lot. Like one the access that our family has to these resources to be supportive. The time that we have, you know, for you to be able to spend time in these treatments. How long you've been working hard on just mental health, and being self aware, and self reflective, and developing coping skills, and regulation and, and how extremely hard it still is like this moment by moment struggle.

Ed: You know, the slightest thing can [snaps]-

Robyn: Right.

Ed: -set me off. It's just like some guy tailgating me on the way home sets me into an anxious fit. Like my heart starts pounding, I start sweating, and I'm going 10 miles over the speed limit. [laughter] Welcome to Michigan, folks.

Robyn: [laughter] That is- that is absolutely the truth. So yeah, then I'm constantly being brought back to how hard I see you working and how, in so many ways, how privileged we are to have access to these resources. And then also that we're adults, and then and I think about these kids. Who whether they're like nervous system vulnerabilities from something like PANS/PANDAS, Lyme, toxic mold, or from complex trauma or the the wide variety of reasons they could have this intensity in their vulner- you know, in vulnerability. That the expectations that we hold for them are sometimes just so wildly inappropriate. Like it's hard as an adult to get it together.

Ed: Well, my expectations of myself are wildly inappropriate as well. 

Robyn: Sure.

Ed: I have to work to present as much- I hear us talking here a lot about- I mean, right now I'm- I'm- I'm not in the- in the worst crisis of this. Like, we're talking about how big of a struggle it is, for me now that I'm, like- I like to call out of the woods. Because when I was lost in the woods for so long, that- it's a whole different other kinds of story. So I don't know what parents are going through, if it's in full swing, and you know, me kind of on the other side, and kind of dealing with the chronic piece of it at this point. It's accepting that it's something we have to deal with for the rest of my life.

Robyn: I think part of what parents are going through is exactly what I went through, which was for them, their words are like, where's my child? Right, like all the times where I was like, where has my husband gone like, and who is this person? And I know, a lot of the listeners haven't been parenting their child since birth. And so maybe they've been parenting, their whole parenting journey with their child has been like this. But there's this still this sense, I think, for so many parents of like, where is my real child? And how- I don't know maybe even talk about that. Like what back when it was obviously we could have never have done this while things were at their highest crisis point. We could have never sat down and talked like this. So do you have any words about like the-.

Ed: Well, I mean to answer directly what you're talking about now, when you're talking about where's my husband? Where's my child? Like, the whole time you're asking that question I was jumping up and down inside myself screaming, ‘I'm right here. Can't you see me? Can't you hear me? I'm right here, please help me, please help me out’. And that was all I could think of. And it was- I guess the way I describe it the most as I was- I was sitting in- I was in the eye of the hurricane, I was sitting there and everything was calm, and everything was spinning around me. And every time I'd reach out to do something, my hand would get hit by one of the malfunctions, that my body was given me. Whether it was memory, whether it was speech, whether it was whatever it was, anxiety, panic attacks, any of that stuff. It’s just every time I tried to get out and find a way to be normal and be me, I just I couldn't. I couldn't. And it didn't matter how hard I tried. It didn't matter how hard I asked for help. I just- I couldn't find my way out of the woods. I needed someone to come in and take my hand and lead me out. But I couldn't.

Robyn: Yeah, well, I think from a caregiver perspective, or a parent perspective. This- the signals are extremely confusing. Just talking to a parent the other day, who is articulating this, if I do, you know this, it's the wrong thing. If I do this, it's the wrong thing. If I do this escalates, if I do this. It's like every single choice and I could possibly do, will all result in the same bad outcome. And I remember feeling that way. Like, it doesn't matter what I do. Like we are- we're off to the races, it's gonna end poorly, it doesn't matter what I do, I could there's nothing I can do to de escalate this, to fix this, to make this better. While on the flip side of it, your experience or the child's experience is why aren’t telling me exactly-.

Ed: I’m telling you exactly what I need, why aren't you giving it to me? 

Robyn: Right.

Ed: Why won't you help me? I don't know how many times I've screamed at you. As- while you're standing there insisting that no matter what you do will be wrong. I feel like- I will feel like I'm telling you what I need and it just doesn't happen or I disagree adamantly. Because I'm stuck. And that's the thing is I get stuck in these things.

Robyn: Yeah, well, let's talk about maybe it took us a long time to figure out what could be slightly helpful. And most of the time, I'm still very bad at it. But every now and again, I get it right, which is, you know, me- me yelling at you. Like, there's nothing I could do that would help you right now. Everything's wrong, that's not helpful.

Ed: Oh, no, no, no, no. I mentioned that, I think. [laughter]

Robyn: And so I know, like for me, in my- in my own mind, there is a- some of it, it's just a sense of frustration, but also that I think there's this hope that like, if I can just help you see, like, how absurd this is right now? If you could just pause and have some self reflection, like, oh, my gosh, I'm freaking out about nothing right now. You'd be like, oh, gosh, I'm so sorry. Let me let me stop. [laughter]

Ed: But that is absurd. 

Robyn: Exactly. 

Ed: What you just said is absurd. 

Robyn: It's completely absurd. And so-

Ed: Because that's the characteristic of that moment, is the fact that I cannot see that I'm stuck. And I'm insisting that I'm not.

Robyn: Yes. So we have found a way that occasionally we can pull ourselves out of those moments that maybe- again, it's you know, it's different. Having a mutual like partner relationship is wildly different, of course, thank a parent/ child relationship. But- but definitely means to saying that you were wrong. And if you could just be reasonable, everything would be better wasn't working out so good. [laughter] So what has ever been helpful?

Ed: Sometimes you actually stop, and you come near me, and you look at me, and you bilaterally pet my face, I guess this is the best way to explain [laughter] your flat hand, stroking down each side of my face alternately. And then I just start to cry. Immediately. Which is always the first thing that happens when I drop out of my- when I dropped out of whatever it is, I dropped out of my crisis. The despair awaits.

Robyn: So I think what you're articulating is, I go- I Stop insisting that you get out of this place and in a way, am willing to just be with you in it for a second.

Ed: Yeah, you step into the woods and reach for my hand to kind of lead me out.

Robyn: Which is- now for everybody listening know, is super hard. And if we were going to give me a grade on that [laughter]-

Ed: Yeah.

Robyn: -like a percentage of how often I'm capable of doing that, it’d be poor.

Ed: F+. Yeah, F+.

Robyn: But we talk a lot on this podcast about rupture repair and you know, good enough parenting and getting it right.

Ed: And we practice that a lot. We’re better at the rupture sometimes and we are through repair but-.

Robyn: We are really good at rupture, we've gotten a lot better at repair. And in a parent/ child relationship, we need to be aiming for about, kind of 30% getting it right. So sometimes we're gonna lose our minds, sometimes we are going to say things that are wildly unhelpful, sometimes we'll say ‘if you would just stop acting this way’. Or worse. There's- I've heard- I've heard it all, I think, and I've probably said it all or thought it all. But every now and again, I can take a breath. Remember it's not about me. And do exactly what we talked about on the podcast, but just see through the behavior. Like see what's really happening inside, which is intense dysregulation and a severe lack of felt safety.

Ed: Yeah, we’re glance-, we're talking about all of the like, just some of the lighter things of- of the worst, I guess that like the biggest thing, the worst thing has been, I didn't even know this existed until we saw that movie, which was called the Mon- Monster Inside Me, which is on Vimeo. You can find that and rent it there, I think. But it's a- pretty much the first documentary about Lyme disease, and what it's like to have it and live through it, and what it's like to be a caregiver. Because the lady who had it and her husband was a filmmaker. So he decided to make this documentary. But they talked about the Lyme rage. And it's something that I dealt with from the very start. And my doctor never mentioned it, no one ever mentioned it until, you know, two and a half years later, when I finally saw this- this- this film. And it's the worst one, it's- so it was a term I had never actually heard before until I saw this movie. And it's the whole Lyme rage thing. And I like I said my doctors never mentioned it. It was just something that I was dealing with that I didn't even know but these moments I am I am often acting before I even- before I even know what's happening. And it's always with extreme anger and- and extreme aggression. And, and you remember that day we were driving and that nice lady decided to pass us in the- in the passing- in the turning lane in a school zone, and I lost my mind. 

Robyn: Yeah. 

Ed: And I chased her down. I didn't even know I was doing it. It's these- it's these things. And I'm reading these articles. And it makes me say horrible- horrible things, to the people I love. And I say horrible, terrible things about them. And it's- I don't even see that it's happening. Like I've had visions of very violent things in my head. When I was at my worst when I was all the way in the woods. And I was lost in these moments. Like I could see myself and imagine myself hurting people. And myself. And that's not- I mean, that's not characteristic for me at all, you know? And yes, that was acute, those things come on really strong. But as I look back in my life, you know, I've always had the- I've always had that a little bit, but it's never been unharnessable. It's never been something that I- that gets away from me before I even know it's there. And now that's the case. And that's- that's probably the scariest thing other than driving down the street, and all of a sudden having no idea where I was or where it was going. That's a fun one too. But the rage is a scary, scary, scary thing. Because I don't know I'm in it. And I can't get out of it.

Robyn: It would be easy for me to start talking about my own experience in all of that and like just how hard it is to- even as you're talking about this, I am like am I really going to put this out there? Like am I really going to let people know that this is what happens in our house? And so some of that shame crops up which, I will talk about next week in next week's episode. But that's such a persistent piece of this puzzle. Not- not just for our family, but for all the families I've ever known. It’s this sense of shame, the sense of how am I letting this happen, how- like, what am I doing wrong, how is this my fault? I think both for the parents and in many ways for the kids. So- so often we don't see the shame that our kids are carrying. But it's not possible to have that intensity of out of control dysregulation in the nervous system and have it not be coupled with shame.

Ed: Yeah, because, yeah, the more I act like that, and then the shame that comes after, it quickly, really quickly turns on- your turns on myself. And I get caught in the self loathing cycle and all of those things, and then it never ends. You get caught in it. And then once you get out of it, you've got to deal with the guilt. And that's the biggest thing, the guilt comes first, and then the crash. And then the despair settles in. It's no fun.

Robyn: No, it's no fun at all.

Ed: No ma'am. 

Robyn: And I'm just, I'm sitting here thinking about how you can articulate this cycle. And I'm thinking of the hundreds and hundreds of kids that I've seen in my office who couldn't articulate it with words. And sometimes they would articulate it in their play, or in their art, or in- in different ways that I would, you know, have the, you know, the privilege of being with kids in my office. But very few of them could talk about that cycle, and where it ended, and the feelings of shame and despair, and, you know, kind of self loathing, and a feeling even of- of who am I? I don't even know who I am. I could see it in their play. But pretty hard for a kid to articulate.

Ed: I knew who I was, I just couldn't express it. Every time I tried, I got smacked in the face with one of my malfunctions, as I tried to reach out to the center of the storm. Because, like, the whole time, it was, yeah-. It was like being lost in the upside down. Everybody's running around screaming, looking for me. And I'm screaming, ‘I'm here, I'm here, I'm here’. But there was no way out. You talked about the shame of the family, knowing that all of this stuff is going on with you. And like this, how bad that feels. I- I just keep thinking about the kid that keeps getting in trouble for that behavior. And standing there knowing that- the- they're so ashamed inside trying to try to fix it, and knowing that they can’t. And it just makes you feel broken, it makes you feel alone, it makes you feel like you're n- there's no way out. Because you're realizing that there is no one in here with me that can help me. The only person that can help me is me at this point. And that's scary place to be. And shame comes quick when you're sitting alone with yourself trying to figure out why you're busted. One of the other things that I keep mentioning, I don't know, if I'm gonna derail this whole idea is the very, very, very beginning. When I was at the very bottom. And we didn't know- everything was going wrong, and nothing was working. And I first started acupuncture as one of the- one of the treatments. And after, you know, months and months of that- him telling me what I was like, when I came in there, of how I was stuck. I couldn't like I couldn't hold a thread a talk, I couldn't hold an idea to talk about it long enough. That's a better way to say that. I- I could never meet his eyes. Anytime he would say something, I would immediately think I was doing it wrong and fully collapse into shame sitting in his office and just look at the floor. And I didn't- I didn't really realize any of this was happening and to have him telling me about it six months later, it just kind of -it was it really shocked me. You know, it really sent me into a- first off that someone else noticed, you know? Because I think I carry all these things and no one notices it. You know, and I have somebody call me that clean and clear on that. Just how much- shame you carry that holds hands with the malfunctions that you perceive yourself as happening- happening. Yeah, there's another one.

Robyn: Yeah, I mean, I think what I continually go back to, maybe this is more my experience in yours, is that partly because of what we understand culturally, and socially, and how we were raised. But there's, there's a sense of right or wrong, good or bad behavior. And if people don't act good, then you shouldn't tolerate that. I think parents are often said things and told things similar to that. Like, my favorite is for the parents whose kids won’t go to school and the administration is just like, well just make them. It's like well, oh, sure, because I haven't tried that, right? The- the sense that we have that we could possibly be in control of someone else's behavior, and their behavior is some sort of statement about-.

Ed: Their worth.

Robyn: Yeah. 

Ed: Yeah. Who they are, what they're worth. Yeah.

Robyn: Yeah. If I hadn't spent the last 20 years of my life, like deconstructing those beliefs for me professionally, I don't- It's hard to know, like, how would- we have gotten through the last two and a half years. I mean, we're both exceptionally tenacious people. And I'd like to think we probably would have figured it out in some way, shape or form. But to have those moments of pause and to think to myself, you know, it's not just regulated, connected kids who feel safe, who do well. But it's regulated, connected, husbands [laughter] and- and humans. And so the times where I was able to kind of catch myself before I joined in the dysregulation of saying like this- like- this isn't- this isn't real, or this isn't him, or he needs help right now, not- 

Ed: Not scolding. 

Robyn: -scolding, criticism. All the things that we think are going to change the problem, but they never ever, ever do.

Ed: Yes, our obsession with controlling others behaviors. Being Human and having that just like everyone else.

Robyn: We certainly all have it. I mean, what- we have that obsession, when we get dysregulated ourselves. When we don't feel safe- every single human when they don't feel safe turns to control and they- they try to control those, or they try to control themselves. It's just the nature of the human- human condition. And I'm not above that, despite, you know, doing this for a living and sitting behind this microphone, having all sorts of brilliant things to say.

Ed: Right? Right. If everyone would just listen, every- everything would be fine.

Robyn: Exactly. So of course, that is not true. It's not- knowing things doesn't solve all the problems by any stretch of the imagination. And I don't know how our family would have gotten through the last couple years if I didn't know what I know about, like the origins of human behavior. I mean, I feel like there would have come a point where I'd have just been like, uh, no. This is not how this is not how this works. We're not continuing with this relationship. But it was, almost- it was mostly pretty easy to see. Or to know- or to at least fall back into the truth that like, this is not real. These are symptoms of something very, very wrong. And whether that's something like Lyme or some other neuro immune something, or history of complex trauma, or whatever it else it is. These behaviors are a symptom of something being really, really, really wrong. I guess when I think about like, Okay, what is- what do I want people to get out of listening to this. And it's- it's that it's worth it. It's that their kids like- you needed me to try to figure out how to hang on. And sometimes I did good. Sometimes I did very bad.

Ed: You keep talking in the past tense. I mean, this is still an ongoing struggle in our every day. I mean, even though I'm out of the woods and functioning again, you know, celebrating the fact that I can speak in front of people again, and have my brain actually function and may not lose words and all of that, but it still- it still happens. I still get stuck. Now, I'm able to go, oh, wait a minute, maybe this isn't real. This isn't real. I know, this isn't real. You know, and for you to be able to see me walk up to you and go, ‘I know this isn't real, but I feel that…’ and you being able to hear that ‘this isn't real part’, and not just the, you know, the bad part that I brought with it, you know? That helps a lot to pull me out of a tailspin. And I didn't have that. I didn't have that separation before. And I'm getting better at it. But I still fail constantly.

Robyn: Well, me too. And I think that's important for people to hear is that there's- this is- in ways and impossible. It's-.

Ed: Yeah. Sometimes I freak out on the Amazon guy. I'm sorry, I didn't mean it. But I have- those are the incidents that I have to deal with now, you know? People do things, and I'm freaking out on them before I even know that I'm doing it.

Robyn: And sometimes I have lots of compassion and curiosity about it. And sometimes I freak out back. [laughter]

Ed: Yes. 

Robyn: And somehow we all just keep trying to figure it- figure it out. And I keep trying to- to see what's real. 

Ed: And I know that I mean, all these parents and caregivers and everyone are all lost in how they're trying to manage this inside. And forget, it's easy to forget how hard we're fighting to stop doing this to you. Except for when I'm lost and don't even know I'm doing it and I'm gone. But that's part of it. That's part of it. And that's all that constant shame that lies underneath everything. Because eventually it becomes, you know, asking for help gets attached to that shame, because it goes wrong too many times. So for that caregiver to be able to find that place, it’s so helpful to stop the- the flat spin that I'm in sometimes. Sometimes I hit the ground real hard. [laughter] Sometimes you can catch me. But-.

Robyn: I think sometimes I have to find a way to remind myself. And again, I'm good at this maybe 5% of the time, but it's better than 4%! So that's cool. That there's- there's no magic answer. Like the- like, it isn't, if I just did the right thing next, or if I could figure out the right next- the right thing to say next, or do next that it'll- it'll solve everything. Like sometimes what's going to happen next is going to be really bad no matter what- no matter what I do. And sometimes when I just lean into that truth, and I stop fighting it, and trying to figure out- and- what's- how do we stop this? How do we save this? How do we eject from this and just be like, well, here we are. And this is terrible. But it'll end eventually, because it has to, is sometimes- sometimes all that we can do.

Ed: And I think that one of the things- it's as we go through all of these, these ruptures, when things get bad, it's really easy to just sit there and man, ‘I really screwed that up, I really screwed it up. That didn't work. That didn't work. It didn't work, I didn't stop at this time, I didn't arrest it, it just went’. And get lost in that, instead of finding a way to be like, ‘okay, I did something, at least, I tried to stop it. And I didn't help this time. But next time, I'll try something, and maybe it'll work’. Like finding that compassion for yourself as a caregiver, knowing that when I'm lost in the woods, at least I see you trying, instead of hollering at me to stop it. [laughter] Which, you know, you can beat yourself up about later. But that's where you got to find the compassion for yourself, I suppose. And you've never talked about that before, I'm sure. [laughter]

Robyn: Well, one thing I do talk about, although I don't know that I've talked about much on this podcast. I’ve talked- I've talked about a lot in my individual work, when I work with parents who are, you know, feeling really shamed about how they can know the right way to behave, but they just can't stop. They just can't- usually, these are parents who are really trying to break enormous cycles of intergen- intergenerational trauma and- and they're struggling to parent in a way that's safe for them and- and for their kids. And there's just a reality to that we can talk about it openly without it being shaming. And also, what I've always told those parents is, I really believe that having awareness of it. Like even if you can't stop what you're doing, but having awareness of ‘I know that what I'm doing isn't so great. And I'm working really hard to do something different’. I actually think that that matters. And I think that's kind of what I'm hearing you say that like even though many, many times I do things that are not helpful in any way, shape or form. I think you can often see that I do try really hard. And that that matters. Like I try.

Ed: Yeah, when you're trapped there looking out that foggy window with the world, having someone at least trying to find you is good, even if they don't find you.

Robyn: And it might not matter in the moment. Like there might not be this moment of like, oh, great, now I feel better. But like, overall, knowing that that's true.

Ed: Yeah, makes you feel quite alone with yourself. And that's a bad neighborhood to be in.

Robyn: I definitely imagine that at some point in our lives, we would sit behind microphones together and do something. I don't know what- I didn't know what it would be. 

Ed: Karaoke? No, no no.

Robyn: [laughter] No! It wouldn't definitely never be karaoke. Ever. 

Ed: Okay.

Robyn:  Never would I do that. And this isn't exactly the topic I ever imagined it would be. And that's what life is, I guess. It just- is shocking, and surprising, and terrible, and wonderful, and terrible again.

Ed: Yep. So it is.

Robyn: Thank you?

Ed: I guess? 

Robyn: Should I say thank you?

Ed: I don't know. I don't know. This is a whole new idea. This kind of exposure. Oh, yeah. About what I've been going through. And what we've been going through is-.

Robyn: Yeah, I mean, I definitely, and I mentioned this at the beginning of last week's podcast, have had a moment probably somewhere in the middle of everything being awful in the last few years of like, someday I may be able to use this, like someday I'll be able to take what I'm learning and help other people. And it's nice to be in a place where things have settled enough that that might be possible to start thinking about this. I mean, we couldn't have done this a year ago. There's no way we could have been this regulated, this thoughtful, or be willing to be this vulnerable and exposed. Like you just can't do that in the middle of crisis. 

Ed: I don't think that my- my word center was even functioning a year ago, I would have forgotten most of the things we were talking about in the middle of forgetting about ‘em. Which I did several times today. But it was way worse. 

Robyn: It was.

Ed: [laughter] This isn't wrapping up anymore.

[overlapping conversation]

Robyn: So let's actually wrap up. Alright, y'all. So next week, I will be back with the third and final episode in this series. Thank you for being willing to be this vulnerable, and this exposed, and-.

Ed: Yeah, I hope that I can help somebody understand what it's like to be in there and not be able to find your way out. And hopefully somebody will be able to find their way out because of this. Because that's not a good place to be. But this was fun. I know that was a little dark. I had to turn it up, but this was fun. I never thought- I never thought it would turn out this way. And we didn't find one.

Robyn: Yeah, we didn’t fight once! We did a good job!

Ed: Yeah, we did. Great. 

Robyn: Okay, love you! 

Ed: Love you!