Latest / System Speak: Complex Trauma and Dissociation / Community Guest: Shainas

Transcript

Community Guest: Shainas · 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.
• 1:00
  Speaker 1: Hello. Hi, how are you doing today?
• 1:03
  Speaker 3: Are you okay doing this? Yeah, I'm good.
• 1:06
  Speaker 1: I think it's a good idea.
• 1:07
  Speaker 3: I think so, right? Like we need to talk about different kinds of trauma too besides, I don't know, and not just the trauma but the overcoming.
• 1:16
  Speaker 1: Yeah, I think that medical trauma just adds to the rest of it. So yeah.
• 1:22
  Speaker 3: How do you want to introduce yourself?
• 1:24
  Speaker 1: My name is Shana. I'm an everyday woman with a couple disabilities and I am a DID diagnosed human.
• 1:35
  Speaker 3: So one of the things I love most about the community is how you all collectively, the people in the community, have used it to care for each other and tend to each other. So we have done things like had extra groups when people graduated. We went to a wedding virtually once. We met with someone the night before they had a big surgery. Just all these different ways to care for each other besides the groups in which we practice.
• 2:08
  And one of the things that we got to do was have a house Zooming for you, which was all about celebrating the process of you requesting a wheelchair accessible apartment. Yes. This was amazing. I love seeing everybody loving on you and you standing up for your yourself. Like, that was amazing.
• 2:33
  But where do you wanna tell that story?
• 2:35
  Speaker 1: First, I wanna thank you and everybody that showed up. The fact that you've even hosted that was really amazing and and thoughtful. And I'm sure that the other parties that you've hosted for others to celebrate their victories as well or help them through struggles. It's a very considerate step for you to take. I don't even know where to start because two years ago, I wouldn't have even I didn't even know I had a voice.
• 3:05
  So, this year was just an awakening, getting the diagnosis of DID and then going into therapy. I learned that I tend to be passive. And that was when I realized that I could have had this help a while ago, but I didn't know how to assert it. And then I started experiencing discrimination, which kind of forced the issue. So I don't have a large family support system or anything like that to buffer some of those rough spots.
• 3:43
  Yeah, I had to go against the owner of a property and ask for them to allow me to accommodate my disability. When they refused, that's when I started advocating more for myself. And when they wouldn't take necessary steps to make sure my health was insured, that's when I started seeking out advocates and learning how to speak up for myself. It's been a pretty profound process. And I'm really grateful for everybody's support.
• 4:15
  You know, people are still asking me how I'm doing and because I'm almost moved in. I'm not there yet, but I finished up the paperwork this week. So I wanna thank everybody that was that's been, you know, supporting me through it. It's been very helpful.
• 4:29
  Speaker 3: That's so kind and such a wonderful experience of attunement, getting to feel those emotional needs being noticed and reflected and met and for you to get loved on like that. Everyone was so happy to support you.
• 4:44
  Speaker 1: Yeah. It was pretty awesome.
• 4:46
  Speaker 3: So just for catching people up on list who listen to the podcast who may not be in the community, can you let's go all the way back to the beginning. Tell us your story. Nothing nothing that's too intrusive, and we can take out anything you change your mind about. Okay?
• 5:02
  Speaker 1: Yeah, that sounds good.
• 5:05
  Speaker 3: Tell go all the way back to just finding out about DID. How did you find out about DID?
• 5:15
  Speaker 1: I wasn't originally honest with my therapist. When I first got in there, I explained to her that it was loud in my head. That was initially why I even went to therapy. I didn't know how to tell her that I had lost time, that I had experiences of fugue, that I had experienced, and I still do experience amnesia. But initially when I went in, was in a battered women's shelter after having experienced some domestic violence.
• 5:48
  And I thought maybe it was the stress of that that was really weight like creating so many issues. And I just, they provided a therapist for us to go to and so us women that were there to go to and I went to her and I said, it's loud in my head. And she wanted me to explain what that loudness was like. And I told her, It's like if you have two radios and two TVs all in the same room playing different programs at once in my head. Eventually, after a couple months, and I was able to open up to her about more of the symptoms like losing time and things like that once I felt safe.
• 6:34
  And that's when she she didn't initially come out and say, You have DID. She did the test with me and say, How do you feel about depersonalization? She explained to me what it was. How do you feel about that? Do you feel that's true to your experience or derealization?
• 6:52
  And she let me ease myself into the water, you know, for lack of a better term. And then she finally just said, Yes, this is what you have. But if I've had it and I actually started getting treatment for what I thought was PTSD and anxiety many years ago when I was about 13. And they weren't very helpful. I was misdiagnosed a few times despite telling them the same things I told her.
• 7:17
  I was misdiagnosed a number of times and called a rebellious teenager. And, I couldn't tell. Well, I did tell them, but they didn't seem to really care that there was still abuse happening at home, it wasn't safe for me to completely open up about that then. But as an adult, I was just diagnosed a year and a half, a year ago.
• 7:40
  Speaker 3: What was that like to have a therapist that was safe enough you could open up with?
• 7:48
  Speaker 1: Well, having a therapist that I could open up to was a relief because I had a I had gone through a number of therapists throughout my life and didn't feel safe enough telling them that at the time I called them memory issues. I didn't feel safe enough explaining some of the symptoms, but she made me feel safe, it felt It felt like being under a warm blanket for the first time after being cold for many years. It just felt very warm and safe. And she made it possible for me to be completely open about what I was experiencing. It wasn't easy to digest the diagnosis.
• 8:33
  Speaker 3: What helped you accept it or where are you in accepting it?
• 8:37
  Speaker 1: I think I still go up and down with the acceptance of it. Similar to my physical disability, I used to tell myself, I'll get through this and I'll be cured. You know? And for the first few months, I really thought that there was gonna be a quick fix. And I used to go into the therapist and say, Can we just mark on the calendar when this is gonna happen?
• 9:01
  That I'll be better. And she would laugh at me and I was like, No, no, no, but I'm serious. I think once I started to listen to the parts and understand that they weren't there to hurt me, that the parts were just a part of my protection, it made the acceptance easier. It's still very difficult though. I mean, I still- I experience stigma with my wheelchair, is an obvious disability.
• 9:37
  So I'm still very guarded about my- my DID. I'm very particular about who I share that with because, there are still a lot of people that I experience that are either, I don't know, my experience of them is that they come off as abusive and they're not my person in my personal circle. They're just acquaintances or people I have to encounter and they weaponize different things as it is, like the wheelchair. So there are times I don't share that information right now, but maybe I'll get to the place one day when I can.
• 10:17
  Speaker 3: What about for you internally? How has that changed understanding what's going on instead of just being overwhelmed by the noise in your head?
• 10:27
  Speaker 1: Well, I'm grateful to not be overwhelmed anymore by the noise in my head. I still get that, but, it changed Well, it felt like the reins on my brain loosened a little bit. I don't know how to explain what it was like for me, but it I was so unsure of what the noise was that I was and I was so afraid of it that that's what drew me to the therapist. So once I understood that these were just it's like parts of me that had been traumatized that have not had those, wounds tended to properly, it made it a different it wasn't a monster anymore. Before it was like a monster that hides under the bed, you know, like a boogeyman or something.
• 11:20
  And it became a wound that needed healed. And that made it easier to approach with compassion, which is what my therapist really pushed me to do.
• 11:32
  Speaker 3: That's such a powerful thing. The idea of acknowledging not just parts of ourselves, but the wounds that we all hold and the idea of tending to those wounds, whether that's through the framework of parts or not.
• 11:54
  Speaker 1: Yeah. Yeah. I think I don't know how many therapists out there are I'm sure there's many, many out there that are just as compassionate as mine, but she just had a way of explaining to me, Listen, this is a wound. Like, let's pretend let's say that you were in a really massive car accident and you had all kinds of wounds, and we have to start surgery. And it looks gross and it's terrifying and But if you look at it that way as opposed to you're damaged rather than you sustained damage, then maybe you can offer yourself a little bit more love and understanding through the process of the healing.
• 12:41
  And that made it much more palatable.
• 12:46
  Speaker 3: How did learning to care for yourself or your parts or those wounds, as you learned about DID and went through therapy for DID, how did that start to impact or shift your outlook externally, where you started caring for yourself as a whole?
• 13:04
  Speaker 1: Well, I don't know what other people experience or how they start their therapy process, but for me, I was terrified of my heart. So once she exposed me to them as parts of me that were just wounds, rather than I was some kind of broken human, I started being more interested in what they had to offer. And having those parts, like I, my one part that's my protector, I was terrified of her because that part of me is very, is the advocate. It's the advocate, but me as the host, I tend to be more passive and a people pleaser. And so when that part went front, I got intimidated by it and would misunderstand or misconstrue advocating for yourself or speaking out being I thought that that equaled aggression.
• 14:12
  I thought that they were one and the same. And I didn't know that they weren't. So there were so many like my younger part, I didn't want to address my inner child because my understanding was I was supposed to be an adult. I didn't There were so many different parts of me that I really couldn't embrace. And through the therapy process, learning how to let the parts flow within me rather than going against the tide of them has been a much smoother ride than trying to resist listening or resist their needs.
• 14:50
  And I think that's been the biggest benefit so far.
• 14:53
  Speaker 3: How would you describe the difference between people pleasing or fawning and advocating for yourself?
• 15:03
  Speaker 1: Well, for me, it's like, if you watch me do either one of them, you can see a huge difference. The people pleasing mine was very, very passive and it was very, it was my child part. And it was very obvious when it would happen. It was just like, okay, okay. And people could walk all over me and I would just kind of let it happen to prevent conflict.
• 15:28
  And I didn't my people pleasing included not acknowledging my own needs, even at my own detriment, if it meant to if it meant being able to avoid that conflict. So when I started to allow the advocate part of me, the protector part of me who's not dangerous in any way, just not afraid to say, Hey, I need this. I need help or, or I don't want you to treat me poorly. Once I started letting that happen, it's there's a significant difference. I think that the difference is you can make people that you care about happy by advocating for yourself.
• 16:17
  People who care about you want you to be able to speak up for yourself and on your own behalf and trying to meet your needs because you're not trying to take away from their needs either. You know what I mean? So I think the biggest part for me was just saying, can't be your doormat anymore. It's not about making other people unhappy. It's about making sure that I'm making me happy and meeting my needs and not feeling guilty about prioritizing that.
• 16:53
  Speaker 3: I think there are two layers to that. What you shared is so profound. There's two layers to it. One is that those of us who, especially when we had childhood or developmental trauma or domestic violence in your example, when we've been through those experiences, so often keeping the other person happy is part of how we stayed safe. Yes.
• 17:22
  And then there's also the layer of not wanting to be like the abusers and so working really hard to care for others and tend for others. When we are caring for others instead of caring for ourself, that's still out of balance. Yes.
• 17:52
  Speaker 1: I think you said it perfectly, and that was something that I struggled with so much. And I did both of those things, and it took being in therapy to understand that that was part of surviving. And I think it's been very awkward being on my own because I don't have to do that now. I don't have a partner, that I have in my life that I have to tend to their needs or anything. And so I have spent a year just trying to learn what food I like.
• 18:26
  You know what I mean? It doesn't seem like much, but it's been a very, very confusing, scary process because like you said, when you go, I had forty six years straight of trauma. And so this is my first year without. And for the first time I was in the grocery store like, what do I like to eat? What do I like to wear?
• 18:52
  How do I like my hair? It could be something that simple all the way up to neglecting medical needs. And I did all of this. I neglected myself terribly. I think you bring to light, you know, the point that we have to do those things because if we don't try to prioritize them all the time, then there's some kind of backlash and then our safety is compromised.
• 19:22
  And it's just nice to have a year finally without it.
• 19:26
  Speaker 3: Well, when our safety is compromised, then we get back into dangerous situations or repeat dangerous relationships or reenactments and things. But when we are also caring for ourselves, that is actually the very thing that liberates us or frees us up to care for others well and receive care from them when we are in safe relationships, whether that's friendships or a romantic relationship or whatever in between, for it to be mutually tending to and caring for each other, that comes through caring for ourselves first so that we're even available to contribute something.
• 20:11
  Speaker 1: Yeah, very much. I still get confused. I mean, I still have a hard time navigating the new friendship thing. My friendships that I've had since I was young, the people that stayed, and I'm so grateful they did because, I don't My DID incorporated so much amnesia and so much fugue that I don't remember. I remembered their names and I didn't remember where from, most of my friends.
• 20:37
  So I'm glad that they stayed and I have a new friendship with them now. But developing new friendships with new people, I still don't know where that line is. I still don't It's not that I don't know where that line is. I still on the side of caution. I still tend to double check that I haven't been hurtful.
• 21:00
  And I don't know. I still have the tendency to people please when it comes to friendships because I don't know where that assertion begins safely. With my with the friends that I've known for years, I know that I can tell them, hey, this is what I'm doing. This is a boundary. Like, I don't even have to say it's a boundary.
• 21:24
  They already respect when I tell them something that makes me uncomfortable. But with new people, I still have to learn that, and it's it's really confusing.
• 21:33
  Speaker 3: Well, and boundaries cannot just be I mean, boundaries can be about this makes me uncomfortable or this is what I'm not going to do. But boundaries can also be this is what I do want and this is what I do need. And so listening to your story reminds me so much of my own in so many ways in that as a young adult, I went through a series of unhealthy, toxic, domestic violence kinds of relationships with people who really have problems with alcohol specifically. And I don't know why that was such a pattern that I kept reliving with different people. But saying, I need a time in my life without any relationships at all to unlearn some of that and to learn how to care for myself, those were the best years and most formative years of my young adult life.
• 22:35
  And I am so glad I did that, even though at the time I thought this was so hard or I don't understand why I'm doing this to myself. It really ended up making a lot of sense so that I learned that my boundary is not just I don't want to be with people who treat me that way, but also I do want to be with people who treat me this way.
• 23:00
  Speaker 1: Right. Right. Yeah. I I feel like I'm gaining that awareness this year. Like, I'll see things and be like, yep, that's something I want.
• 23:11
  It's I think what you said is is really, interesting. It doesn't boundaries don't just include what you don't want. They include what you do want. And I see where I can apply it. But when it comes to friendship, like new friendship.
• 23:31
  You know, I'm new to the city I live in. Just moved into this not so great apartment that I will be moving out of. But in this area, I've met a few people and I don't know how to say, you know, I kinda need this. Even even saying that, see, can't say I need this. I I even insert the kind of as almost like a here, be I don't know how you're gonna respond to this, you know?
• 23:58
  So I still get the trepidation when it comes to friendship, but I feel like my backbone as far as understanding romantically going forward what I want, I know what I want to be treated like. And I feel like I'm getting a lot of practice advocating for myself when it comes to like my physical disability. I know what I want to be treated like and I know what I don't want to be treated like and I think that's helpful. And I feel like it does apply to friendships. I just don't feel as comfortable asserting that in new friendships.
• 24:34
  Not yet. Don't know. So weird.
• 24:39
  Speaker 3: I think it makes sense. It reminds me of what we were talking about in the workbook group last night about how our brains are designed for connection. And so we very naturally reach out for connection. But when we have had relational trauma, then relationship feels dangerous. And so we pull back from it, we get away.
• 25:05
  That's the flight, right? And so I don't think, and I'm not your therapist and I'm not trying to be intrusive, but it doesn't sound to me like that it's, you don't know how. It's that you're waiting to see. Because with new people, especially in a new location, a new environment, and part of your environment has not been safe, there are parts of your brain that are really aware of safety and trying to keep you safe, and that is a good and right thing. That's not a I can't do it yet thing.
• 25:45
  Speaker 1: Yeah. But I feel like I'm trying I feel honestly, it's the weirdest thing. I feel like I'm trying to learn for the first time in my life how to do healthy relationships. And it just feels And my therapist says that, you know, especially coming out of trauma, we are like pendulums. You know, we'll swing really far to one way and then we'll swing really far back to the other.
• 26:11
  And it's just a matter of when you can finally find the happy middle of where your comfort zone is. I feel like I double back or I'll say I'll reach out and reach out to people and because I isolate. It's very easy for me to isolate. So I'm like, I'm isolating. I need to start reaching out.
• 26:31
  And when people don't reach back, I don't know how to say, okay. I don't really that's when I get confused. And I'm like, well, I don't know how this goes. I don't know how healthy relationships go. I'm used to being stalked and, I'm used to being mistreated.
• 26:47
  I don't know- I don't know how to it's not that I don't know how. I feel like I'm trying, and I feel like, once I'm physically able because right now I am confined to my my apartment a lot of the time with the wheelchair issue. Once I'm able to get out more, I believe that I will be exposed to more people and have more opportunities to keep trying.
• 27:14
  Speaker 3: Well, and it's progressive, right? Like we practice, like with toddlers that are just learning how to pull themselves up or how to stand or to walk, we don't get mad at them when they fall.
• 27:28
  Speaker 1: Right.
• 27:29
  Speaker 3: And this is literally a new skill. When we have deficits in our skills because we never had the opportunity to build those skills, it makes sense that we start at the beginning. So when I left those domestic violence relationships, like each time I left, it was progressive. Right? Like, I learned one thing that next time I'm in a relationship, I don't want that.
• 27:54
  Next time I'm in a relationship, I don't want that. But it took me all of those relationships to realize, okay, there's this pattern with alcohol and domestic violence, and I don't want any of that. And so it took me that time of not being in a relationship to learn, oh, not only do I not wanna be hurt in a relationship, I want to be safe in a relationship. And so through that experience, ultimately I found the husband who is good and kind and I said, oh, I can be I mean, not I don't really say it like that, but like you experience it. Right?
• 28:35
  Oh, okay. So he is good and kind. So this is what I want because what I want is a safe relationship. And then you're in the safe relationship and then you finally realize oh but there's a grocery store. I don't just want to be safe I also want to eat.
• 28:53
  What kinds of foods do I actually
• 28:55
  Speaker 1: like? Right.
• 28:58
  Speaker 3: Right? What is it that I want? Safe should have been a baseline. For people who grow up in safe relationships and in safe families, they already have safe as their baseline. So when they start picking things out about what they want in a relationship, they get to pick and choose of what they want to add and what is good that they enjoy or what they have in common or all these kinds of things.
• 29:23
  They're not just looking for I don't want to be hurt.
• 29:26
  Speaker 1: Right. Yeah. I I mean, I hear you. I agree with you wholeheartedly. And I've been enjoying my two years of being single and just I think before I can even tell people or my future partner, whoever it may be, what I want or even before I can figure that out for myself, I'm trying to learn how to just figure me out.
• 29:54
  Like, what do I like? You know, how do I know what I want if I don't even know what I like? So right now, I think that's the most interesting process because I discovered that I was eating foods for years that I don't like. Or, I don't know. It's a the self discovery time for me.
• 30:17
  And I feel like once once I feel comfortable with understanding who I am, what I enjoy, and what I want my life to look like, then I'll be able to say how I want to incorporate another human into my world to make it even better. Like, They would be a bonus.
• 30:42
  Speaker 3: Well, and being able to recognize them when you find them you've done as all that other opposed to trying out things that then cause harm because you don't know what you're looking for.
• 30:55
  Speaker 1: Right. Yeah. It's a spooky thing because I noticed that and I don't know if this is because of the disability or the, you know, the wheelchair and the or what it is, but the men that approach me, and I'm not I identify as bisexual, but I would prefer no label, but if other people need it, then I'm bisexual. I'm an open person who's open to whatever. And not whatever, but anyway, I still tend to see the same types of men coming around me, like, even just trying to approach me.
• 31:43
  So I go to my therapist and I say, something's wrong with me because I'm still attracting this. She's like, no, you're not. They're attracted because they assume you're vulnerable. This isn't because you are attracting it. You are not a bad magnet.
• 32:01
  You know, it's they see something that other people would recognize or assume is a vulnerability, which is my disability, my physical disability, and that's what they think they can target. And then once I start speaking and advocating, you know, hey, no, I'm just not, I'm not down for that type of behavior or treatment or whatever, they back off. But it still happens. And until I can figure out how to navigate that, I'm not I'm not tiptoeing in the in the dating pool.
• 32:34
  Speaker 3: Right. Right. Which which is wise and good and healthy of you caring for you and advocating for yourself even with yourself of until it feels safe or until I know or until I see evidence that now time is different from memory time. You know?
• 32:59
  Speaker 1: Yeah. And learning how to trust myself. I think when I started advocating for myself regarding my wheelchair disability and explaining, no, I have a right to have my needs met, I realized that that meant every need. That meant being able to eat, like you said, being able to get dressed, be able to do things I enjoy doing, being able to have my me time. But I didn't know that, and I'm learning that.
• 33:37
  And it's how do you Now I'm just trying to learn how to find the balance between advocating and just avoiding altogether. Because I advocate for myself, but at the same time, am I going too far to be protecting myself that I'm not leaving any room? You know what I mean? For for people that don't have the intention of hurting me. Well I don't know.
• 34:06
  But it it's that that little pendulum is is still just swinging a bit. Well,
• 34:19
  Speaker 3: being able to do that, it goes back to the hardest piece of all, which is even acknowledging that we have needs at all.
• 34:25
  Speaker 1: Yes. Yeah. And not feeling like a burden for having them. I that was and it still is like the the bully in my head is feeling guilty for having what one of my parts, says so many needs. I have a teenager part that's like, Oh my gosh, there's so many needs.
• 34:48
  And I do, but we all do. And because of the trauma that I came from, having any needs was you weren't supposed to express those. So the fact that I'm even able to look at them is a pretty big, a huge change, much less being able to speak out for them and actually having to fight for them on many occasions here in the last few months. But it's also very empowering once you start.
• 35:20
  Speaker 3: Exactly. And that's one of the things we were talking about is how with relational trauma, those wounds and the needs are so invisible. So it's really hard to identify them, much less respond to them. But with physical disabilities, it can be more visual sometimes. Deafness is not very visual unless we're talking or unless someone sees cochlear implants.
• 35:46
  But other times people make these assumptions that they're meeting our needs, but there's misattunement because they haven't actually listened to us. So the example I shared in group was that I have my middle son has cerebral palsy and spina bifida, and there are times I still have to change him or help him with that. And he is 14 years old now. I can't just lay him on the baby changing table in the restaurant bathroom and take Right. Care of his
• 36:20
  Speaker 1: Yeah, I experience the invisible aspect of my neuromuscular disease. It's rare. It's called stiff person syndrome. And it's like, I guess they say the number is like one in a million people get it. And when I have the proper immunotherapy treatments, I get short periods of time where I can walk again.
• 36:46
  And so people think I'm not sick. And I have to pay very close attention to what's going on in my body or I end up back in the wheelchair again quicker. But during that time, I experienced the invisible part of it. And I could sit there and say to somebody, I can't walk that far. And they're like, oh, I know my back hurts too.
• 37:05
  But you know, like they minimize it or, or say, you were, you were walking yesterday. Why are you in a wheelchair today?
• 37:14
  Speaker 3: We see the same with our son that he can walk short distances on his own just fine and people who don't know him might not even notice. But for him to do anything long distance or intense or over time or very far, he just, he can't. He needs the wheelchair. Or with our daughter who's sometimes on oxygen and sometimes not.
• 37:34
  Speaker 1: Yeah, yeah. And I feel like what I learned this year, thank God for my therapist because in it in going having escaped that domestic violence, I was exposed to, therapy and crisis intervention specialists and stuff that helped me understand that I had a voice. It took a while to use it, but I think what was so empowering about the process of speaking out about the disabilities and getting the right people involved to help me get my needs met, it helped me learn how to trust myself and my parts and understand that as spooky or as stigmatized as I might even see it on myself. Like, are times that I'm like, I'm just great crazy. And I'm like, no, don't don't talk to yourself that way.
• 38:31
  I realized that my parts have done a magnificent job of trying trying to learn how to do these things. And this year, finally, having all of them come together to understand, yeah, you're allowed. You're allowed to protect me, allowing my parents to do what they need to do to protect me. And that means advocating and speaking out. And that means understanding my boundaries.
• 38:56
  And all of those things came from me embracing the strengths, the individual strengths of the individual parts. Because on my own, I wouldn't have done it. On my own, I was passive. On my own, I was a people pleaser. On my own, I was afraid to argue.
• 39:14
  I was afraid of conflict. I always saw any kind of conflict as being possibly aggressive, didn't wanna be an abuser, and I just couldn't separate them. And embracing those parts of myself that are not aggressive at all, they just speak out and say, Hey, I'm a squeaky wheel and I need some oil. It really empowered. It helped the blending of my partners be more possible.
• 39:45
  I experienced more blending than I ever have in my life. It's been an incredible experience and I wouldn't wish anybody to have to go through it. I'm sorry for what you experienced with your son. I hate that you have to go through that. I hate that you have to go anywhere and somebody would hand you braille.
• 40:05
  I mean, that's just
• 40:06
  Speaker 3: You're talking about how when I go on the airplanes, they give me a braille card even though I'm deaf.
• 40:13
  Speaker 1: Yes. Yes. Yeah. I mean, I didn't know that deafness could necessarily make you blind, but, you know, it's just when we encounter those things, for my entire life, I would just sit there and tolerate those types of things. And now I know how to assert myself in a way that isn't mean.
• 40:34
  I never was mean, but I know how to actually not bend and buckle underneath it. I know how to say, Well, I appreciate your gesture, but A, B, and C is what I mean. Or when I'm started to be when people have been treating me poorly, recently regarding my disability, I call them out right there. And it's been one of the most empowering experiences. It's been so profound letting my parts do what they were made to do.
• 41:12
  Letting them speak for me, letting them be with me in this. It's been awesome.
• 41:18
  Speaker 3: That's so amazing. You but you didn't just wake up one day and say, oh, I'm gonna work with my parts and we're gonna advocate for ourselves and now we have a new apartment this afternoon. This was like progress over time and things you learned from therapy and part of your healing. What did that look like going from deciding, I don't think this apartment is what I need, to applying for a new apartment that's wheelchair accessible? What were those steps you took for yourself?
• 41:51
  Speaker 1: It was well, like you said, it was a process. I was my disability, I became a wheelchair user in 2009, and I didn't even know then what my options were, and I didn't research it. I I was too busy taking care of the abusive relationship I was in. What it looks like was realizing throughout my day, you know, being in my wheelchair and saying, this isn't- there's gotta be a different way. There's gotta be a better way.
• 42:26
  And looking at wheelchair accessible apartments going, yes, that's- that looks like something that I would benefit from. And I didn't start advocating for my- I mean, I did that mild. I was very meek about it. I didn't feel comfortable with it right away. It felt very scary because I didn't wanna rock the boat.
• 42:47
  But just asking for a handicap parking spot, asking for a ramp for my apartment door. And then when they said no to that, then the that triggered my other parts to say, that's it. You you know what you need now, and now we're gonna go get it. So, know, before I would have resisted that. I would have resisted those parts because I would have felt that they were combative, and they're not combative, they're protective.
• 43:14
  So that entailed doing research about what accessible apartments look like, how wide are doorways supposed to be, calling places like fair housing, calling places like my local civil rights commissions, calling grievance departments and asking, you know, what do I do about these issues that I'm experiencing with discrimination? And and it it looks like me trying to boil spaghetti on my counter, on my oven, and realizing if I try to lift that, could very possibly burn my face. I need an apartment with a lower oven. It- they pieced- it started piecing itself together and I just let, my parts come together, like as a little collective group. And I let my protector go ahead and advocate for me.
• 44:06
  I let my little my little parts say I want a lower countertop. I wanna be able to wash dishes without banging my head on the counter. It was a long process. It was two years worth of trying to figure out what those needs were and years in therapy saying, I have to If I'm gonna get these, I have to learn and be comfortable with saying I need them. And not only do I need them, but I have a right to need them.
• 44:38
  I'm worthy of those needs being met. And that was the hardest part. So it's something that I still have to say. As I as I make a need known to somebody, I I in my head over and over, I have a right I have a right to have this need met. I am worthy of having my needs met.
• 44:59
  But it was a process and it's still a process. You know, I'm hoping that going forward, I can even take it up a notch. I mean, I went into a local discount store and realized all their racks or half their racks were not not accessible. And I was like, wow, how far am I gonna go with this? And I realized that as far as it takes.
• 45:26
  As long as it takes and as far as it takes me. I'm finally willing to fight for my needs and I have a good therapist that gave me, helped me build a good foundation for that.
• 45:38
  Speaker 3: That's such a good reminder that it takes time and it takes practice. Like, every part of our progress builds on our progress before. Yeah. And at the same time, did you even hear what you said? Like, do you I just you said out loud, I am worthy of having needs.
• 46:02
  I am worthy of having my needs met. What is that like to even say that out loud?
• 46:08
  Speaker 1: It feels very weird. It feels weird, but and there are still some of my parts that are still in trauma time that don't understand that that's true. But I just keep reiterating it almost like, you know, trying to acquire a new habit. I'm trying to acquire a healthy habit of believing my words and that's gonna take me doing it over and over and over again. And sometimes those steps are small and sometimes there are many, many steps along the way that I didn't realize that they were actually much bigger in the grand scheme of things until my therapist pointed them out to me, especially in the moments that I felt defeated.
• 47:02
  But looking back, I'm now I am much more inclined to celebrate the small victories. I think it's so important. It's been so helpful to me celebrating those small victories that my, you know, my therapist helped me start to recognize. Like, Hey, did you get out of bed today? Yeah?
• 47:26
  All right. That's a small victory. Hey, did you get out of bed and wash your dishes? You had two small victories. And if you did five things, you had five of them.
• 47:36
  And that was something that I had to practice trying to focus on every day. And there were plenty of days that my body was just not well. And the best I could do was say, I'm resting today. And that was a small victory too. So I think that that's been the You know, it's been rewarding.
• 47:58
  It's been helpful to be given that. To say, Hey, it's all right to say you're worthy. It's okay to not even believe it right now. You'll eventually believe it if you keep telling yourself. It's no different than the way they were able to infuse us with the trauma of believing we were worthless.
• 48:15
  They just kept infusing us with it. And so I'm just switching it up. I'm switching it to the opposite. I am worth it. Yes, I'm worth it.
• 48:26
  So is everybody else.
• 48:27
  Speaker 3: I love that so much too, respecting when we're just out of spoons, but also celebrating when good care of ourselves gives us not just enough spoons, but actual victories. Like you said, that image is so beautiful to me because I feel like at least in my life coming out of three really difficult years and spending the last year recovering from those three years, I feel like I'm just now getting to a place even physically where I'm not at zero all the time, and I'm not negative all the time, like in a negative balance, like not enough spoons. I have not only enough spoons, but for the first time in three years, I have a whole reservoir. And being able to use that well for some victories is amazing, but also one of my victories is not giving all of that away, that I can keep some of that to myself so I'm still okay even when life requires spoons.
• 49:30
  Speaker 1: Yeah. I think that's awesome. I think the fact that you can that you can keep some of your spoons for yourself so that you can have your reservoir still have some reserves in it is amazing. You know, I'm just getting to where I will get through my day and have used all my spoons, but at least I didn't go into the negative with my spoons. Exactly.
• 49:58
  Haven't gotten to where there's a reserve yet, but I have gotten to where I have rationed my spoons, which is still that's still a victory. Every victory counts.
• 50:12
  Speaker 3: A huge victory, and that's how I built up my reservoir with but it took a lot of time in healing. I'm not I'm I'm not saying it's even better than that space of not having enough spoons. Staying alive is the victory. Yeah. And And having DID by itself is so hard.
• 50:33
  Having a disability by itself is so hard. Having accessibility issues in life around you is so hard. Having all of that together is brutal.
• 50:45
  Speaker 1: Yes. It really can be. Especially if you can't explain to all your parts. I don't think you understand that I'm in a wheelchair. Like, you know, they want to do certain things or they want certain things and it's just not feasible for the body.
• 51:00
  So yeah, it can be a tricky thing to try to navigate, you know? But it's much better this year having a therapist, having somewhere to take the moments that feel exhausting and take the questions on, Hey, do you have any tool, anything in your mental health toolkit that can help with A, B and C? I think that's been, like, super beneficial. A lot of the tools of staying present and staying in now time have been some of the ones that have got me through the hardest moments. And- and they're so simple, but they're there, you know?
• 51:47
  It's I don't know. It's it was very hard to figure out. It was a lot of stuff to figure out, but I learned a lot about myself in the meantime, though, too. So it was hard, but it's like, Oh my gosh, I did it. I met years ago, I never even thought I'd get away from the guy that I was with.
• 52:09
  I never thought I was going to survive that. So that was huge anyway. But everything that's happened since then, everything that I managed to accomplish since then, even though it took very, very small steps, I could barely see I was moving. I look back and it's like, Oh my gosh, I did it. And that helps build up the reminder that I marked it.
• 52:29
  Look, see, you're okay. You're you're you're doing excellent. Doing excellent.
• 52:36
  Speaker 3: It's such a big deal. And we are all so proud of you, and it's been a beautiful thing to watch unfold. And the level of caring for yourself and advocating for yourself and not just those things, but you recognizing your own efforts. It has just been so beautiful and empowering, and we are so grateful for you sharing.
• 52:57
  Speaker 1: I'm really grateful for all of you because I thought it was selfish to just sit there and be, like, porn tooting or whatever. And I was like, wait a minute, though. There's plenty of people I want to toot with me. They were part of the process. You know, my advocates were there with me.
• 53:12
  My therapist was there with me. They all deserved to toot with me. But yeah, it was a big deal and it felt really good and it felt good to be supported. It felt so great to have the community. I could go to the community not just with my DID, but also with my disability and still get support with that as well, even though it wasn't pertaining directly to DID.
• 53:38
  So yeah, it's been amazing and I'm so grateful for it.
• 53:43
  Speaker 3: We are so glad and we are so happy to be celebrating with you. Is there anything else that you wanted to share before we let you go?
• 53:51
  Speaker 1: I love the chips and salsa day. Thank you. And thank you so much for your creation of this community, Emma. You deserve to be commended in all your bravery and all the work that you do being vulnerable with all of us.
• 54:05
  Speaker 3: So grateful for you truly, and thank you very much.
• 54:09
  Speaker 1: Well, you do a great job at what you do, Emma. The fact that you even asked me, I'm flattered thank you. I hope it helps somebody else with a disability. But more than that, like, I know that I told you in the email, but it matters to me what you share. And not because I know you, but because I don't.
• 54:29
  I don't know you. And the fact that you go on that podcast and you share about stuff that I wouldn't know how to even express out loud is super commendable. You share that with somebody who doesn't know you. And that's it's just it's powerful. You need to be proud of yourself and any haters that come at you, just like you teach us.
• 54:52
  You know, we don't brush it off. Brush it off and let those of us that say, heck, yeah, you're doing awesome. You're doing awesome. I don't need to know you to be proud of you. Don't make me cry.
• 55:04
  Speaker 3: Thank you. That's so awesome.
• 55:06
  Speaker 1: Be there with you. Yeah. You're doing a great job. You and the husband both.
• 55:10
  Speaker 3: Thank you very much, really, really. And I appreciate you coming on and sharing and being another voice for disability and medical trauma and overcoming all of that and acknowledging the struggle, but also the beauty of it. It's just so powerful.
• 55:27
  Speaker 1: Thank you. Well, thank you for being a part of it too. Thank you very much for helping me out and supporting me.
• 55:32
  Speaker 3: We're so proud of you. Let us know when it's time for more salsa.
• 55:36
  Speaker 1: Goodbye. Bye bye.
• 56:04
  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.