Latest / System Speak: Complex Trauma and Dissociation / Community Guest: Nestor (Part 1 of 2)

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Community Guest: Nestor (Part 1 of 2) · System Speak: Complex Trauma and Dissociation

• 0:08
  Speaker 1: Over:
• 0:11
  Speaker 2: Welcome to the System Speak Podcast, a podcast about Dissociative Identity Disorder. If you are new to the podcast, we recommend starting at the beginning episodes and listen in order to hear our story and what we have learned through this endeavor. Current episodes may be more applicable to long time listeners and are likely to contain more advanced topics, emotional or other triggering content, and or reference earlier episodes that provide more context to what we are currently learning and experiencing. As always, please care for yourself during and after listening to the podcast. Thank you.
• 1:02
  Speaker 1: Well, we are the Nester 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 in to systemsspeak.org's community tab, you can find us very easily under the name The Nestor System.
• 1:22
  Speaker 3: Tell us let's even back up. Tell us about this project you're doing on the website.
• 1:27
  Speaker 1: 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.
• 1:40
  Speaker 3: It's such a big project.
• 1:41
  Speaker 1: Absolutely. I'm right now the the systemsspeak.org slash 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 day care yet.
• 2:02
  Speaker 3: 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.
• 2:19
  Speaker 1: 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 in 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 a domestic violence situation. That's what we want the list to eventually become is just a a place to find all of the safe places in your community.
• 3:05
  Speaker 3: So more than just therapy specific even.
• 3:08
  Speaker 1: 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 we did 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 could 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.
• 3:56
  Speaker 3: 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 phone book that they treat trauma, but this is a person who other people with lived experience have had positive experiences and feel safe with.
• 4:25
  Speaker 1: Exactly. Exactly. We actually added, our own pastor pastor to the to one of the lists because because his response to us disclosing our DID was so extraordinarily positive.
• 4:41
  Speaker 3: 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.
• 5:15
  Speaker 1: Well, thank you so much. It means I don't wanna 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 I feel like okay. So our default in the fight flight freeze fawn system is to freeze. We're big freezers.
• 5:40
  When we're stressed, we pump the brakes hard, and that turns out in and for us, it turns out in things like self neglect or in social withdrawal or just not responding 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 the dread that I usually feel about starting the day, I just kinda feel a a snap, and suddenly I'm conscious and awake. And that's unprecedented for us.
• 6:18
  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 friends or something, but in helping to build these resources, we feel like we're fleeing towards something.
• 6:34
  Speaker 3: What is that like turning toward instead of having to run away or try to keep yourself safe, but you are actively contributing to the healing of others?
• 6:45
  Speaker 1: It is what we've wanted to do since since we first began to reckon with our own multiplicity.
• 6:52
  Speaker 3: How did 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?
• 7:07
  Speaker 1: 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 when I found out that there was a podcast dedicated to DID, I, Kat, was just, floored and excited.
• 7:45
  And we've been faithful listeners ever since, except for a part of 2020 when we were kinda between jobs, but let's pretend that that part of 2020 didn't happen. And this time, just recently when the intro changed was when we realized that there was a system speak community, and it was, like, it it was faster than a rumor spreading through an office. We all decided that we had to get onto the system speak 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.
• 8:37
  Speaker 3: 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. And so, like, they feel all tough, and I'm like, oh, we are hanging with the cool people now because it's just amusing me.
• 9:14
  They're just the 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 and these resources that you're doing, all of the 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.
• 10:21
  We just sort of thought everyone skipped through that. So I didn't think anyone would notice.
• 10:27
  Speaker 1: So we definitely noticed. Maybe, we 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. So we're very change sensitive, and we notice things.
• 10:49
  Speaker 3: 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 and doing that as a global project from our perspective of who is safe and what feels good and what feels like healing, I I just I don't even have words for what a thing it is.
• 11:47
  Speaker 1: 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.
• 12:25
  Speaker 3: It is it has been an, 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.
• 13:01
  Speaker 1: That is so well said. It when I think about all of the skills that we learn in therapy, I I picture someone riding like a like a really tall, bicycle, like a or or like a unicycle or or a penny farthing 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. And right now, we're still wobbly, on our emotional bicycle, but Momentum is doing a lot. I'm a I'm a big analogy person. I hope that you know what I'm saying here.
• 13:41
  Speaker 3: 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.
• 14:14
  Speaker 1: 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, with little ones inside who may be such trauma holders that they that they just, that 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.
• 15:03
  It's it's just I don't even have words to to describe it, how people are experiencing positive connections in some ways as if for the first time or maybe exactly for the first time.
• 15:15
  Speaker 3: 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 messed things up so publicly and to such 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.
• 16:13
  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 accessible 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 were like, I just wanted to check-in that we're still here.
• 17:12
  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 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 and 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.
• 17:51
  Speaker 1: Wow. That is powerful. And I'm feeling that so much. We've we seriously messed up our relationships before. We have been, you know, we we've been trauma dumped on, and we've trauma dumped on other people.
• 18:09
  And because I think for us, that was kind of the from other support networks that we've been part of, that was kind of our only script for communicating. That 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 we're to get into the details. I mean, not not to not to knock details.
• 18:37
  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 looking for advice. That that piece is still so new to us.
• 18:57
  Speaker 3: 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'm 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.
• 19:36
  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 can go to the community. And because I have that Yeah. It frees up my my spoons or my space or whatever for 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.
• 20:43
  And it has somehow I don't know. You said unprecedented. I I would say miraculous. Like, I don't know. Somehow has I love that.
• 20:56
  It 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?
• 21:25
  And it's different than just other platforms for support because this is specifically focused on healing and specifically focused on the podcast things. So, like, we're learning 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've just listened to or learned from somebody or or shared with each other or something like that.
• 21:58
  Speaker 1: There's a lot there. This is this is Natalie jumping in. I our therapist, 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 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 or not about, you know, more positive things as well.
• 22:37
  And I feel like we have trauma bonded in other communities so badly that, that System Speaks 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.
• 23:07
  Speaker 3: 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.
• 23:29
  That's the difference.
• 23:31
  Speaker 1: That's so much like, healing together, the conference.
• 23:36
  Speaker 3: 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. There I mean, there are sometimes that like, I posted about a trigger yesterday, but we focus on the trigger, like, what it is.
• 23:57
  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 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.
• 24:36
  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.
• 24:51
  Speaker 1: Yeah. For sure. I 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 gonna 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.
• 25:27
  And there's not a lot of just vulnerable honesty in between there.
• 25:33
  Speaker 3: I'm just reflecting on what you shared and I think that what's so important no matter what platform anyone is using or or finds useful for them or supportive for them or what combination of platforms people 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.
• 26:33
  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.
• 26:46
  I hope that you have a better day today. You know, like, whatever whatever is on that range where we are tending to our selves 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. And so holding that together is a really big deal.
• 27:49
  Speaker 1: Wow. Holding that together is a really big deal. It really is. It it it's such a good practice for real life. It's such a good strength builder.
• 28:02
  And, I and by no by by the way, I by no means want to, just knock, Facebook. Whatever platform someone chooses is fine. I I was just kind of speaking to the culture that we sometimes have of presenting a nicer face to people that sort that is sort of inauthentic. Also, by the way, I love the picture of the horse, and it kind of triggered in a good way a a little one to come out and comment, like, you you've got a horsies? Like, that kind of thing, which was so nice.
• 28:37
  And it's so nice that we could we could act on that impulse without it seeming really odd or out of place.
• 28:45
  Speaker 3: 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 I don't wanna be intrusive at all, but what has that been like for you as a system with autism? What is that like?
• 29:05
  How does that impact your experiences, your healing? What does that look like from your perspective?
• 29:12
  Speaker 1: Oh gosh. That I love that question, but it's such a big question. I think for us, autism, had a direct impact on this is Kat 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 I wanna say, like, twice as likely to be abused as, well, as the general population.
• 29:49
  And even though even though we weren't die 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. You're we don't you're weird. We don't like you. We don't relate to you.
• 30:09
  We don't understand you. We're not gonna we're not gonna 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 or or by, you know, like, encouraging the kids to kinda 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.
• 30:56
  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. Every every part of us experiences our experiences our ASD a little bit differently.
• 31:32
  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 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 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.
• 32:43
  And it and it was one of those 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 nonverbal. One of them communicates, just with others inside or by pressing buttons or selecting words on, an AAC app, and, the other is more of a tightest and just communicates by writing all the time.
• 33:26
  Speaker 3: It's an interesting thing to look at clinically because autism as how it's classified, not, I mean, the ethics and 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 is involved or other kinds of abuse from caregivers, then relational trauma is involved by default anyway, and those neglects that come in through that also cause delays. And so there 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 as a broader community, there seems to be a high population of people who also have autism who are also survivors.
• 35:01
  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 altogether, and I appreciate you sharing with us what that's been like for you.
• 35:42
  Speaker 2: Thank you so much for listening to us and for all of your support for the podcast, our books, and them being donated to survivors and the community. It means so much to us as we try to create something that's never been done before, not like this. Connection brings healing. One of the ways we practice this is in community together. The link for the community is in the show notes.
• 36:10
  We look forward to seeing you there while we practice caring for ourselves, caring for our family, and participating with those who also for community. And remember, I'm just a human, not a therapist for the community, and not there for dating, and not there to be shiny happy. Less shiny, actually. I'm there to heal too. That's what peer support is all about.
• 36:37
  Being human together. So yeah, sometimes we'll see you there.