Transcript: Episode 307
307. Nestor System (Part One)
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[Short piano piece is played, lasting about 20 seconds]
[Note: Podcast host is in bold. Guest is in standard font]
Well, we are the Nestor system. That's obviously not our real name. We decided to go with the names that we gave each other and to go by our system name. But if you log into Systemspeak, that orgs community tab, you can find us very easily under the name “The Nestor System.”
Tell us-. Let's even back up. Tell us about this project you're doing on the website.
For the past couple of weeks, I've been compiling lists of every single DID-related or DID-relevant resource that we can find in every country and state we can find it in.
It's such a big project.
Absolutely. I'm right now-. The systemspeak.org/resources are only a couple of weeks old. So if you don't find your home there, or if the list looks pretty inadequate, well, that's, that's because it is. The list is only a couple of weeks old. So if the list were a human, it wouldn't be eligible for daycare yet.
Oh, my goodness. You all are so funny. We are doing this list, like, this is not just resources out there. But we are making this list be unique in that it is specifically from the lived experience perspective.
Absolutely. I want-. I obviously can't vet every single person that we put on this list, what their status or philosophy is when it comes to taking people with DID. You know, especially psychotherapists and psychologists and hospitals. But what we really want is to have a comprehensive place to find anything that you need, whether that's a therapist right now. We're working on just adding every member of the ISSTD who's made their information public. Or say, finding an attorney who can help you with leaving the domestic violence situation. That's what we want the list to eventually become is just a place to find all of the safe places in your community.
So more than just therapy specific, even.
Exactly. It's hard to, it's hard to know just how big we might make this thing. Or, or just what's out there. Eventually, we stopped making-. We didn't stop making it, but we've been sort of jumping between compiling lists for geographic areas, like, like states or specific countries, and transitioned into also compiling media that can be helpful. Whether that's the podcast like this one, or whether that's YouTube channels, or public advocates, or even Twitter accounts, things that people can access regardless of where they come from. And we've even added a few resources that we found that were in, that were in Chinese or Dutch or Spanish.
I love that. That we are working together as a community. People are submitting things. And we are finding resources in different languages, and other cultures, and with sensitivity, and from the perspective of lived experience. So not just this is a person who says online or in the phonebook that they treat trauma, but this is a person who other people with lived experience have had past positive experiences and feel safe with.
Exactly. Exactly. We actually added our own pastor to one of the lists because, because his response to us disclosing our DID was so extraordinarily positive.
I love that we're making this something positive and something supportive, and something that the whole community is helping submit ideas to, and that on the spreadsheets there are even comments or or additional feedback so people sort of know why that that person is significant or helpful. And I love how that has been a reflection of the community already. That we said, “this is something we need,” and people are just starting to help. And you have done so much. We're so grateful for you.
Well, thank you so much. It means-. I don't want to say “so much” so many times, because that sounds repetitive. But it it means so much to us to be part of this community. I feel like, I feel like-. Okay, so our default in the fight, flight, freeze, fawn system is to freeze. We are big freezers. When we're stressed, we pump the brakes hard. And that turns out in-. And for us, that turns out in things like self-neglect, or in social withdrawal, or just not responding and not getting things done. Right now, we feel like we're locked into flight. I feel like there's, I feel like there's a rubber band twisted up inside of me. And every morning now when I wake up, instead of feeling the dread that I usually feel about starting the day, I just kind of feel a snap, and suddenly I'm conscious and awake. And that's unprecedented for us. But the thing about our flight response right now is that right now we don't feel, finally we don't feel like we're fleeing from something. But in helping to build these resources, we feel like we're fleeing towards something.
What is that like turning toward instead of having to run away or try to keep yourself safe, but you're actively contributing to the healing of others?
It is. What we've wanted to do since since we first began to reckon with our own multiplicity.
How do you, how did you even find the community? Because at the time we're recording this, it's still not been announced publicly. And yet, there's already so many people who have found it. How did you, how did you notice it was happening?
Well we’ve been listening to the podcast for about a year and a half, starting when we moved into the city and started commuting by bus. Our commute to work has always been between an hour and an hour and a half. Which, I mean, when you take public transportation is not really that bad. But we needed something to do to keep people from interacting with us on public transportation. And podcasts were were just awesome. We turned out to be podcast people. And what I found out that there was a podcast dedicated to DID, I—Cat—was just floored and excited. And we've been faithful listeners ever since. Except for a part of 2020 when we were kind of between jobs, but let's pretend that that part of 2020 didn't happen. [Laughter] And this time, just recently, when the intro changed was when we realized that there was a Systemspeak community. And it was like it was faster than a rumor spreading through an office, we all decided that we had to get onto this Systemspeak community, even if it meant even if it meant going public. Because at this point in our lives we've reached this sort of critical mass where fear of what may happen if people find out has been eclipsed by the desire to connect and the dissatisfaction with feeling—to appropriate a term—feeling closeted.
I love this because we have learned over the last few years and shared on the podcast that healing only comes through connection. And yet connection takes so much courage. And there are lots of people on the community already who have not come out. They may have pseudonyms or something. And my favorite part about this is how so many of them are choosing like roller derby names. [Laughter] And so, like, they feel all tough. And I'm like, “Oh, we're hanging with the cool people now.” [Laughter] It's just amusing me. They're just, the delight and the creativity in expressing oneself and finding a safe way to participate safely in a safe community. And the commitment level that people have had in keeping the community safe. And how people have so actively jumped in to participating, and contributing, and caring for themselves and each other so that it can be a high functioning and safe community. It has been a powerful, powerful experience, I think.
And this spreadsheet and these resources that you're doing—all of these spreadsheets, not just one—but these resources are just an example of that. It's just, I'm just in awe of people's participation level. And the beauty that has come from this project that was entirely unexpected. And before we even announced it. That's so funny that you caught it when the intro changed. We just sort of thought everyone skipped through that. So I didn't think anyone would notice.
We definitely noticed. Maybe we are, well to be to be totally honest, we're exactly what you would imagine someone who spends hours and hours a day making spreadsheets is, and that is autistic. [Laughter] So we're very change sensitive, and we notice things.
But that's amazing! And I love how you have found such a unique and special and important way to contribute. Like, you already had these skills, and you already had this knowledge. And you have put all of that together to help us build this list of resources from the lived experience point of view. Which matters so much, especially when we talk about what happens when therapy goes wrong, and what happens when therapy goes right. And then, again, broadening that out into other things of how else, like, what other resources do we need to be healthy and well and safe. And doing that as a global project from our perspective of who is safe, and what feels good, and what feels like healing. I just I don't even have words for what a thing it is.
That this community is really, gonna use the word again, unprecedented because people with DID aren't supposed to be able to make these kinds of healthy connections. We’re supposed to be such dysfunctional people who can't be around each other. But in fact, we're not just a community of people who are positive and proactive, we're really a community of some pretty high achievers. Like, like Melissa Parker who is just amazing. I heard her, she was, I think one of the most recent podcasts that I heard as of when we're recording this.
It is, it has been, I don't even know, an exciting thing to see it. And see everyone being so gentle with each other, but also having good boundaries, sharing to the degree that they want to share, not sharing if they're not feeling comfortable, but supporting others, and responding to people, and being attentive. It's like we have built this environment in which we all get to practice attunement. And we get to practice connection in safe ways with the understanding that all of us are struggling with that. And we talk about the struggle too.
That is so well said. When I think about all of the skills that we learn in therapy, I picture someone riding like a really tall bicycle, or like a unicycle or a pennyfarthing, because it takes so much balance and coordination and practice, but yet, it can look so amazing or so effortless when it's all, when it's all said and done. Right now we're still wobbly on our emotional bicycle. But momentum is doing a lot. I’m a big analogy person. I hope that you know what I'm saying.
I love that. And I love how we are still safe and accepted when we are still wobbly. Like, I love even just that phrase of “I still feel wobbly.” I'm trying. But this is scary. My balance feels off. And one of the things we've talked about in the community a lot is how even positive interaction can be outside our window of tolerance, because of trauma and relational trauma, and how that gets triggered, and how we're all being so careful with each other, but also so so vulnerable to participate.
Oh my gosh. I think I just read the, the post to that effect and it just made me think of some of the work that I've done outside of therapy with little ones inside who may be such trauma holders that they, that they just, but maybe not only are they like untrusting or unfamiliar with what is good, but they just don't have a schema for what's going on in the real world. Like, that just doesn't compute for them yet. And that's a, that's a deep dark place to be. And yet, it's so powerful to see, to see that coming to light. It's, it's just, I don't even have words to describe it, how people are experiencing positive connections, in some ways, as for the first time, or maybe exactly for the first time.
I think for the first time is a big deal. I feel like it is a, I don't know, for us, it's a very natural next step. I feel like we attempted and talked about on the podcast, attempting friendship and really feel like we failed so miserably and mess things up so publicly [Laughter] to such a degree that it was hard to recover. And the impact of that on us, and the impact of that on our therapy experiences, plus the pandemic happening, all of those things together, left us so isolated, and so full of shame, and unable to find our way out that even even just trying to wrap that up so that we can move forward again, whether that's in therapy, or in the podcast, or continuing to try with friendships, it was so so difficult and it was so so messy. And I feel not just the shame, but I just, I feel badly that it's so messy that I literally don't have the skills assessable to me to know how to do things, or to know how to get it right, or how to respond, or how to be there for someone else, or all of these things that we talk about in mutual relationships of care and connection.
And yet, in the community, we all go there with that understanding of “We are struggling with this. This is hard for us.” And trying to practice in little bits. And because it's virtual, it gives us that space to sort of pace things and to take our time. And other times when we're in a better place or a solid place and we're able to participate a lot. Or, like last night, we are like, “I just wanted to check in that we're still here, we're okay, but therapy was hard and real life was hard, and I'm overwhelmed and can't talk about that. But thank you all for being here. And thank you for your support and encouragement.” You know, just being able to check in and have someone understand in very few words, with very little explanation, what you are trying to express and how you are feeling, and have that responsiveness back in that attunement of, “I get that because I feel it too. And that's what this is like for me. And here's what helps when I try.” Or just being present in it even when it's not something that needs fixing.
Wow. That is powerful. And I'm feeling that so much. We've, we've seriously messed up our relationships before. We have been, you know, we've been trauma dumped on and we've trauma dumped on other people. And because I think for us that was kind of the only, from other support networks that we've been part of, that was kind of our only script for communicating, was the only means we knew of connecting. But then, when that's all there is, it's not enough. It's not enough to just share that we're struggling or how, or to get into the details. I mean, not to not to knock details, I think that that can be an important processing piece. But for us the idea of checking in, and being present, and explicitly agreeing on what's needed, whether that's “Oh, I just need to vent here,” or “I actually am just looking for advice,” that that piece is still so new to us.
It is. And I feel like there's a there's something empowering about having other people where it's new for them too, so that we can come to this space and say, “I'm feeling this and this,” or “such and such happened and here's how I am dealing with that or how I'm not dealing with that.” And without having to like educate, or explain, or be shamed, or be in trouble because other people didn't like how that felt for them. Like, we're just so accepted, and we're just so loved, and people understand because they are also going through that. And because I have that support now, and because we have each other in the community, in my life, when I am trying to do friendships or something, those friendships don't have to be all about DID, or all about explaining myself, or all about whatever, because my expectations have changed. I understand now that they don't understand. Which is not the same as malicious. But the community does understand.
And so those pieces of me and that wrestling, and that not wanting to be alone while I'm processing this, that could go to the community. And because I have that, it frees p my spoons, or my space, or whatever, for participating in life around me and in trying to keep practicing and building relationships with people who are not multiple or don't understand DID. And it has somehow, I don't know. You said “unprecedented.” I would say miraculous. Like, I don't know. Somehow has-. I love that. It has somehow given, I don't know, increased our stability somehow. It has given us a bit of a foundation where I can go out into the world and try to function at new levels because now for the first time I know where I can safely fall. Does that make sense? And I can come back and I can touch base here and be like, “This is what I'm wrestling with,” or “This is what I'm learning. Who else is dealing with this,” or “Who else has-.“ And it's different than just other platforms for support because this is specifically focused on healing, and specifically focused on the podcast thing. So like, we're learning together, and reflecting together, and discussing things we've learned on the podcast. So it becomes this laid out journey towards healing where we're kind of all on the same page about things because we're reflecting on the same stuff that we just listened to, or learn from somebody, or shared with each other, or something like that.
There's a lot there. This is, this is Natalie jumping in. I, um, our therapists just last week, or I'm sorry, just a couple of days ago, mentioned the phrase “trauma bonding.” And I tried to reflect back to him what that was and what that meant. And I thought, so, that would be a bond or like a relationship that's all about talking about the trauma that you have in common, but not about, but not about anything else. Or, or not about, you know, more positive things as well. I feel like we have trauma bonded in other communities so badly that Systemspeak’s community is really just, gosh, I don't know. So far, it feels like, it just feels like we’re so much more celebratory or jovial while still being honest.
Yes. That's a beautiful way of seeing it. There's this level of vulnerability, but it's not focused on the trauma itself. It's focused on the healing. Like, what is the opposite of trauma bonding? When you're focused and committed as a group to making progress, and moving forward, and healing, and connecting and caring? Like that's community. That's the difference. [Laughter] That's so much like Healing Together, the conference. Yes, exactly. Exactly. It really, really reminds me of that.
Where, of course we all have traumas in our background, but that's not what we're dishing about in the community. I mean, there are some times that, like, I posted about a trigger yesterday, but we focus on the trigger. Like what it is, here's how I dealt with it, how do you guys deal with it, and facing that. Not just focused on the struggle, and the falling apart, and the trauma itself. Not in a trauma dumping way. I feel like so far, and I hope we can, we've tried to do that on the podcast even when things got really really hard. And, and we've pushed the line on that sometimes because things happen, things do get hard. That's part of having trauma and trauma responses. That is a legitimate part of our story. But I feel like there's a particular and unique flavor. I don't know what other word to use for it, for a feeling to… where it's about wrestling with it, and about moving forward, not just getting lost in it, or stuck in it or over identifying with it.
Yeah, for sure. I just feel like it's having those really difficult times as part of having trauma. But I feel like, maybe this is the trauma speaking, but I feel like it's also just part of life. We're all going to have really high highs and low lows. And I feel like in our society we're just supposed to be constantly updating our Facebook with new hashtag goals, and showing everybody how together we have it. Or else, you know, we're in our sealed support group and we're trauma bonding with a whole bunch of other people who have the same issues as we do. And there's not a lot of just vulnerable honesty in between there.
I'm just reflecting on what you shared. And I think that what's so important no matter what platform anyone is using, or finds useful for them, or supportive for them, or what combination of platforms people will find or find supportive, there's something that we have learned over the last year about just how important acceptance is, and what a role that plays in actual real and safe love, and real and safe caring, and real and safe connection, all of which includes a responsiveness and attending to. And I think that's part of the difference between just trauma dumping, and saying, “Hey, I was triggered today. Here's how I've handled it so far, but I'm having trouble shaking it off.” Or sharing, “Hey, I found this resource. And this resource was a great thing that would be really helpful for other people. So I'm posting it here and just letting you all know.” Or, “Here's a picture of my horse. It's a beautiful morning. I hope that you have a better day today.” [Laughter] You know, like, whatever, whatever is on that range where we are tending to ourselves, and we are tending to each other, and being raw and authentic and vulnerable, with all of the courage that that takes, but also not dismissing the struggle itself. Because we have to acknowledge that as part of our own healing. And holding that, staying present with that, learning to tend to those pieces—whether that's pieces of trauma, or parts of ourselves, or the piece of the experience itself in therapy—that is part of healing. Because we are already good at dissociating. [Laughter] And so holding that together is a big deal.
Wow. Holding that together is a really big deal. It really is. It's such a good practice for real life. It's such a good strength builder. And I don't, by the way, I by no means want to just knock Facebook. Whatever platform someone chooses is fine. I was just kind of speaking to the culture that we sometimes have of presenting a nicer face to people that is sort of inauthentic.
Also, by the way, I love the picture of the horse. That it kind of triggered, in a good way, a little one to come out and comment, like, “You've got a horsey?” like that. Which was so nice. And it's so nice that we could we could act on that impulse without it seeming really odd or out of place.
That's so special. You also mentioned for your system autism. And we have two sons with autism as well, so we've talked about that a little bit on the podcast. But, and I don't want to be intrusive at all, but what has that been like for you as a system with autism? What is that like? How does that impact your experiences, your healing? What does that look like from your perspective?
Oh, gosh, that-. I love that question. It's such a big question. I think for us, autism had a direct impact on—this is Cat again—I feel like autism had a direct impact on the way that our DID formed. I think both because we kind of have a lower threshold for stress and anxiety, but also because having a disability makes you, I want to say like, twice as likely to be abused as well as the general population. Even though, even though we were, we weren’t diagnosed until we were 19. But even given that, we did have to deal with the sort of covert ableism that was, that kind of took the form of “you're weird, we don't, you are weird, we don't like you, we don't relate to you, we don't understand you, we're not going to, we're not going to give you space to learn or to be authentic.” And for us there were, particularly in school, there was, there was bullying, but there were also adults who really facilitated that by either singling us out or by, you know, like encouraging the kids to kind of teach us how to behave, or whatever.
Gosh, and you could even look at growing up autistic, through almost like a, almost like a relational trauma framework as you need explicit instruction to learn social skills and communication skills. But instead, because of some family circumstances, we actually got much less socialization than the average child got. And that really made us unprepared to go out into the world and have a normal life. So there's that.
The other area where I think autism and DID kind of overlap for us is, we almost experience our autistic symptoms as if they were on shuffle. [Laughter] Every, every part of us experiences our experiences, our ASD, a little bit differently. Some people have much more auditory sensitivity, and are even are much more stressed out by noises. Some of us are less stressed out by that, but are more change resistant or more kind of routine oriented. It's just kind of, it's just kind of all over the place. And that can make life and knowing what we need kind of unpredictable. And it was one of the first clues that we got back when we were in high school that we might be multiple. Because even before we were technically diagnosed, we knew we were autistic and kind of consumed a lot of self-help resources on the internet under that assumption. But the experience of not knowing how the autism, how the autism was going to react, or what we were going to need from moment to moment was a real challenge. And it was one of the first things that started to push, at least me, towards “maybe there's something else going on outside of, or in addition to, the ASD piece.”
So yeah. We have a couple of insiders who are who are non-verbal. One of them communicates just with others inside or by pressing buttons or selecting words on an AACF. And the other is more of a typist and just communicates by writing all the time.
It's an interesting thing to look at clinically because autism as how it's classified-. Not, I mean, the ethics in the rightness and wrongness of that is a whole different episode. But as it's classified with, as a developmental disorder and that developmental delay layer, so overlaps with the delays that come from trauma regardless of what kind of trauma. Because when relational trauma’s involved, or other kinds of abuse from caregivers, then relational trauma’s involved by default anyway. And those neglects that come in through that also caused delays. And so, there is seems to be this overlap where the DID community has a lot of people who are also diagnosed with autism. And even those who don't have an autism diagnosis seem to have similar experiences in some of those delays. Whether that's how hard it is to learn social skills, or how hard it is to learn how to communicate, plus the sensory overload because of polyvagal and window of tolerance and all of these things, and not even counting like a trigger, for example. And so as a broader community, there seems to be a high population of people who also have autism who are also survivors. And when you throw in the facts, like what you shared about people with disabilities being more likely to be abused in some way, or have trauma in some way, that's just a lot all together. And I appreciate you sharing with us what that's been like for you.
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