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Diagnosed with Complex Trauma and a Dissociative Disorder, Emma and her system share what they learn along the way about complex trauma, dissociation (CPTSD, OSDD, DID, Dissociative Identity Disorder (Multiple Personality), etc.), and mental health. Educational, supportive, inclusive, and inspiring, System Speak documents her healing journey through the best and worst of life in recovery through insights, conversations, and collaborations.
Over:
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 longtime 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.
Speaker 3:I've just had therapy and it's already been an emotional week. The doctors for our daughter have said she's not gonna make it till summer if she doesn't have that big surgery again where they reconstruct her whole airway. It's pretty dangerous and risky, but she has it about every six months as she grows. But each time doing it is what gives us another six months. But last time she did it, she was in a coma for three weeks and her organs were failing, and we really thought we had lost her that time.
Speaker 3:And yesterday at church, there was a lady talking about her six year old that died from SMA. My kids have a friend with SMA. He's in a wheelchair and on a vent. My daughter's almost gotten a trach so many times. But it's high risk for infection and she doesn't have a good immune system and it wouldn't for sure make her quality of life actually better.
Speaker 3:So the scales have never tipped that way, even though it's always on the table. We've had the training and everything in case it happens. But she was talking in church about that day when they told her that her son was dying, that it was really the end. And I know that we can't compare stories, and we can't compare traumas. And I know that we still have our daughter with us, and so it's not fair for me to feel badly about it at all.
Speaker 3:But I listened to her talk and I thought, you only had to live that one day and then carry it in memory time. And I don't at all mean to minimize how hard that one day was, but we keep living it over and over and over again in now time. For five years, they've said she wasn't going to live. And I'm grateful for every day that she has. But it's also been a really hard five years.
Speaker 3:I don't know if medical trauma counts and I know that's not what the podcast is about all the time, but it's a very real part of our life. Resuscitating our daughter, watching beeps on a machine to see if she's going to be alive or not, and other days watching her play and pretending everything's normal. It's one of those times where you try to remember that now time is safe, but it doesn't entirely feel that way. We thought it was just going to be a regular airway clinic visit. When they told us this was coming, they asked our daughter what things she would like to do before surgery in case there's anything they can help her experience before then just in case she dies.
Speaker 3:We've already done her Make A Wish trip. She wished to go to New York City, which we talk about often because the husband and his work with musicals there. It was a really sweet trip. She got to do so many things. They got to go back stage at Lion King.
Speaker 3:A limo took us everywhere we went. The children got to eat hot dogs on the street and pretzels and bagels and everything else. They ate so much food. They learned how to fold their pizza in half. They rode subways and buses and even took a taxi around the corner once just for fun.
Speaker 3:We stayed in some ritzy hotel that was fancier than I've ever seen anything, and it was bigger than our house is now. They got to go to the Harry Potter Museum and see the Statue Of Liberty and ride on the ferry so they think they had a big boat trip. They got to meet all of the husband's friends, and it was a pretty special adventure. And we were grateful. We never would have been able to take all six of the children to New York City by ourselves.
Speaker 3:I can't imagine how much that trip cost. But the hospital themselves asked her again, my daughter, what she would like to do before she dies. She looked at them and said, I just wanna be five. No one ever thought she would make it to five. She wasn't supposed to be born alive or live a day or a month or make it through her first year.
Speaker 3:She's been in comas and had strokes, but her feisty spirit keeps her going somehow and also makes her hard to parent. She's as funny as anything and smart as a whip. And she delights me to no end. She turns five in April and they said she can't wait until summer for the surgery or she won't make it. And so because all she asked for was to turn five, they've scheduled pre op the day after her birthday and surgery the next day after that.
Speaker 3:So even after talking to the palliative care team, chaplains, and counselors all afternoon with the children, While the husband took them home for dinner, I went to see the family therapist to update her before she saw the children. And then we were there for almost five hours last night, all of us talking together and processing as a family because it's hard what we've been through. It's hard what they went through before they came to us as a family. And all the things we've been through as a family have been hard, and keeping her alive is hard. All of that led to us going to bed late last night, and so it was hard to wake up this morning.
Speaker 3:We were all tired, and our eyes were all irritated and red, all of us a bit swollen from crying. Plus, on the way out of our appointment, she passed out and stopped breathing, they had to call the ambulance right there. So we were in the waiting room doing CPR, and she pulled through, and everyone cheered when she started screaming. Not because they were happy she was scared or that she was hurting or that it's a hard thing when she stops breathing, but because our family knows that screaming is breathing, so she was on oxygen all night trying to get her sats up. But it's getting bad enough that now she can't even get carbon dioxide out.
Speaker 3:Her airway's the size of a coffee straw. And every time they rebuild it, it helps for a little while while she grows. But scar tissue doesn't grow and has to get scraped out. So it's a risky surgery, but her heart's working too hard. So I thought that's what we were gonna talk about in therapy today.
Speaker 3:And I went trying to be brave and trying to be honest and trying to be vulnerable to talk about that. Because if we're going to stay in therapy, I don't want to keep piling things on the list. I want to get them out of me. So we talked to the counselor with the palliative care team and we talked to the family therapist last night and we showed up for therapy today even though anyone would have understood if we canceled. Because that really is how hard our life can be.
Speaker 3:And I don't know why she who wasn't supposed to live a day is still with us. And why our friend Jamie's son is fighting for his life against leukemia. Or why her friend's son died when he was only eight hours old. None of it is fair, but all of it has brought us together. And that's what I was thinking about on the way to therapy.
Speaker 3:And my emotions were raw and tender, but also my heart was full of gratitude. Because while we wouldn't wish any of these experiences on any of these children, and why we wouldn't want any of these things to happen. I'm really glad we've been brought together. But when I got into therapy, she said that today was the day we had decided to call the therapist to sort of finalize or formalize our transfer of care or something like that. So we signed a release just for the one phone call.
Speaker 3:And just like that, we were sitting there and she was calling the therapist. I think in all three years we saw her, we only called her once. And that was when DHS came because someone reported that our daughter wasn't really sick. And all she said was that we just have to be ourselves and answer their questions and give them information. And it would be okay.
Speaker 3:And that was a scary day but she was right. We gave them all the medical records and they saw the child and they talked to the pediatrician and read the hospital records and just dismissed it as a false report and said it was unsubstantiated and closed it that day. And nothing ever happened because it really was okay, even though that was a really scary experience. So it's only the second time that I know of that we ever called the therapist. I wasn't sure what we were supposed to say or what we were supposed to do, and I felt shy about it all of a sudden.
Speaker 3:I didn't have anything to say that I wanted to say in front of the new lady, and I didn't wanna make the therapist work. So I didn't wanna say anything there. So I didn't wanna say anything at all, really, which as it turns out makes for a difficult phone call if you're not talking. But while I sat there and waited to see what they would say or what was happening, I realized I can't even remember her face and that maybe I should have looked while I had the chance. And then very, very quickly, I had a lot of big feelings because I didn't know until I heard her voice how much I missed her.
Speaker 3:And I didn't know until they talked that I had done any of it okay or right or made any progress or that any of what we had done counted. I didn't know what she thought about it or that it mattered or what it looked like from the outside when you put all the pieces together. And I thought, if that was good and if that was okay, then why did we leave? And I felt a pain in my heart that it mattered and that I had lost something good. I felt like I had taken something that was one of the only right things I had and I had taken it away from myself.
Speaker 1:I tried really hard not to bother her even though she said she would still be there.
Speaker 3:I thought I didn't want to make her feel like she's having to work all the time, and I don't wanna be that annoying person. And sometimes when I try to connect inappropriate ways, I just mess it all up, and I'm not very good at it. And then it's even harder to clean up. And so it almost feels sometimes like for my own dignity, I just ought not to try. And so I was trying to stay away, trying to turn it off, trying to shut it down, which is the opposite of turning towards.
Speaker 3:But when I heard her voice, I realized that really what I was doing was trying to push away how much it hurt to leave and how much it hurt to miss her and how much it hurt to feel safe and then lose that, and how much it hurt to have such a very big and open and gaping wound.
Speaker 1:And I sat there thinking about my daughter and thinking about the therapist and listening to them talk. And I couldn't move, and I couldn't breathe, and I stayed very still, and I did not make a sound. But tears poured down my face like someone turning on a faucet. And I just sat there and cried, but I stayed there while I cried.
Speaker 3:And I don't know if I've ever cried so
Speaker 1:much as I've cried in the last week,
Speaker 3:but I stayed there for the crying, and I felt how much it hurt. They were both respectful doing what therapists do. And the therapist totally said that thing about safety and stabilization just like the new lady said, even though she had never told me that while we were doing it. And they just talked very carefully and generally about how we communicate inside and who's on board and how oriented we are, like, to the present and knowing what today is and when we are and where we are and things like that. They were very respectful and very not intrusive.
Speaker 3:Although the new lady talked about the podcast and that she had listened to it before we had ever contacted her. And so I learned from the therapist that she had never listened to the podcast at all unless it was an episode we sent her specifically. So we're sticking with that plan. And it wasn't too hard and it wasn't too difficult and everything was okay. And the new lady's just trying to be careful and know how to help us.
Speaker 3:But the therapist is still safe and says we know what we need and how to help ourselves. And every time I heard her talk, tears just poured out of me because it hurt so much, and I knew that's why I was staying away and why I wasn't trying to connect with anyone, even my friends or the husband. Because I think the pain has been so big, and it hurts so much that I had to avoid all of them to also avoid that. And so I realized that how dissociation works a little bit in that way, I guess, because there's so much there,
Speaker 1:and it does hurt so much. So even the good hurts. Even though no one was doing anything wrong, the husband is very safe. Our best friend is very safe. The therapist is very safe, and all of it is good.
Speaker 1:But when the good touches me, it hurts because there's so much pain there. And I don't know how to hold both at the same time, and so I push both away at the same time. And so to hear her or to see her also means to hurt. Not because she is
Speaker 3:not good or safe or because I don't want to see her
Speaker 1:or because I don't want to talk to my friends,
Speaker 3:but because they see me. And if I see me, then I see what hurts too.
Speaker 1:But, also, it was worse when she hung up the new lady when it was done. And just like that, the therapist was gone. And if I had known that everything was going okay, we wouldn't have left. And if I knew we were doing it right, we wouldn't have stopped. And I'm angry, maybe, that we can't just keep going, that we can't see her anymore, and I don't know why this would be necessary.
Speaker 1:It's not fair that we have to start over. It's not fair that we finally have a safe place and it's taken away. And I'm angry at myself for thinking this is so hard. It's been five months since I was at her office. She doesn't even have that office anymore.
Speaker 3:Except also it's not just me, and we didn't quit, and we didn't
Speaker 1:run away. What happened was that we got well enough to make the right choice for our family, which is the adult and good thing to do. But I don't understand why that was required of us. I don't understand why God would make me do that, except it's about my daughter. If we didn't live here, we would have lost her last night.
Speaker 1:That's why we moved here for this hospital. And I'm trying hard to accept that. And we talk about it with the family therapist and the palliative care team. And I understand it in my head, and I feel guilty and ashamed, and I'm so selfish that I can't get past this. But it's not where I want to live, and it's not fair that we had to give up the therapist.
Speaker 1:And I'm ashamed that we can work so hard at so many different things
Speaker 3:to pay for the children and provide for
Speaker 1:them and try and pay all these hospital bills. And that it's never enough and I'm so tired and that we couldn't get enough money to keep going. But also, I know it wasn't just about the money, it was about the time. But it's a really hard thing to wake up and stay present and to do the work of being a better mother and a better wife and being present with the family. It's exhausting.
Speaker 1:But I know it's the right thing, and so I'm trying. I'm trying so hard. But when I heard the therapist today, it was like I was as spaced out as I could be and as flat as I could be, and I couldn't breathe or move or do anything. But it was like my tears came to life, and they were just pouring out of me as soon as we heard her voice,
Speaker 3:Which also makes me a creepy weirdo.
Speaker 1:And then also I was embarrassed because this new lady is sitting there and we're still strangers to each other and I'm just crying and can't stop. Which confirms the weirdo theory. But I didn't know what
Speaker 3:to do. I couldn't make it stop,
Speaker 1:and I just wanted to run out of there. I wanted to leave.
Speaker 3:And she, the new lady, because she's a therapist, just said, finally, what is it you're feeling right now? Feeling like throat punching you. Thanks for asking. No. I didn't throat punch a therapist, and I didn't even mean to say that right now.
Speaker 3:But I couldn't even breathe enough to speak and she just waited there all the way across the room. She doesn't touch me, the new lady. But she finally said, what is it that you're feeling? And I finally said, I miss her, except I said the therapist's name. And she said, what's that like when you miss her?
Speaker 3:Well, apparently it's hard and makes me cry. That's what it's like. Thank you for asking. Oh, I hate therapy. But I didn't know how to answer or what to say.
Speaker 3:Except then I realized what's wrong is that it's disappearing. I can't remember her, what she looked like, or how she sounded. Her office is fading away, and I don't know how to hang on to it. I don't know how to hold on to that. I don't even know that I have permission to.
Speaker 3:And I finally found words, and I said that. And the new lady said, you absolutely have permission to hold on to that. She made it very clear. It's like, who are you, lady? You don't know anything.
Speaker 3:And then the new lady said about us talking before about this being a trigger for loss and other things we've lost too, not just the therapist, but obviously also the therapist. Losing her, that's legit. But the new lady started asking me questions. I didn't answer them out loud, just in my head. But she was asking me about what the therapist's office looks like and where I would sit and what I could feel and what I could see and what she sounded like.
Speaker 3:And I didn't tell her any of those things out loud. I felt protective of it somehow for me and for her. I don't know. But she kept asking me questions like more and more detailed questions. And it was like as she asked, I started to remember.
Speaker 3:I don't know how that works, but I started to remember what the therapist looked like and sounded like and what her office looked like and smelled like and felt like and where I sat and how I felt when I got to see her or talk to her or just be there. There were days in the beginning I was so exhausted from everything that was happening and not knowing I would have paid a hundred dollars just to get to sleep on her couch. Maybe that's what happens when you dissociate anyway. But she was asking me, the new lady was asking me these questions and it was like painting a picture in my mind and I started to remember. And then I started crying harder because it was like a gift.
Speaker 3:Like, I wanted to hold on to that. I needed to hold on to that. And she told me that she could help me. And would it be okay if I let her help me do just that? Keep that as a safe place.
Speaker 3:And I told her I didn't know anywhere else safer than the therapist's office. And she said that that's a perfect starting place, and I could keep it with me. And then I told her that I couldn't, not even in real life because she's gone, because she's not even in that office anymore. And the new lady said that that's perfect too because no one can mess it up. That it's like a good thing in memory time that I get to keep and that it's not bad to keep it because it's my own experience of it.
Speaker 3:And so I told her it was okay if she could help me with that. And she said that grief was real whether I'm grieving the therapist therapist or grieving other things too, but that all of it's real and it's okay to miss the therapist and who she is and what she means to me. That it's not bad to feel those things. And so she told me to think of her office, the therapist's office, and to watch her fingers. And the new lady lifted up her hand and just barely moved her hand one way and the other.
Speaker 3:And all of a sudden, I had this memory that I didn't even realize was a memory. I thought at first it was like a picture, but I remembered it of playing football with her in the office, which I didn't even realize I did. Maybe I made this up. But it was like as she moved her hands left and right and back and forth, it was like passing the foot football with a therapist. And just like that, I felt safe again.
Speaker 3:And then I cried all over again from the relief of it and for getting that peace back and for realizing that not everything in memory time is bad, and some of it I want to keep. She just moved her hands for just a minute, like holding up a couple fingers like a u in sign language. She just did it a few times and asked how I felt, And she said, let's try it again and remember more things and see what else you can remember and feel safe with from the therapist's office, except she said her name. And so we did it again, and then we did it again, and then we did it again. And she said that I could even put sounds to it so, like, every time she said the therapist's name, that I would remember I was safe,
Speaker 1:which is kind of how it already works. So maybe that was a starting place. And we did it several times, and it was like getting a present of being able to remember her and being able to keep her even though I'm far away and even though I don't have anything to offer her or even if it's not real life, That the safety that I learned there and the things that I felt there, I get to keep. And then all of a sudden, I was still crying, but my tears were happy, and I remembered other things too. And the new lady said that anyone who wanted to listen, even if they didn't wanna talk to her, the new lady, anyone who wanted to listen and to remember therapist, she said her name, that they could remember too and that they can do it too.
Speaker 1:And all of a sudden, I started remembering things. I started knowing things just the way I know things, like what is red and what is blue and what is grass and what is sky. I just knew them. I remember painting with her. I remember laughing with her.
Speaker 1:I remember telling stories. I remember crying with her. I remember being angry with her. Not at her, but she was not afraid of me being upset. All of my feelings were okay.
Speaker 1:All of me was okay, and it was like for a split second, second, for just a moment, I knew that and could remember that. So that all of a sudden I wasn't just remembering the therapist or remembering the therapist's office as a safe place, but I was remembering that I was safe, that I am safe, that all of my parts are safe, not just that they are safe in now time, but I mean that I don't have to be afraid of them because the therapist was not afraid of them. That all of me is okay, that I can just accept that they're there, that I can accept them as part of me, whatever that means. And it changed something, and I don't even know what it was, and I don't know how long I get to hang on to it. And so I have to put it here where I can listen to it again.
Speaker 1:And she said we can practice it. That is like building a muscle, but that now time is safe doesn't get taken away from me. Even when we have to change therapists, even when my daughter is sick, even when life is really, really hard, to stay in it instead of running away. And then and then and then she told me that was EMDR. And that's how I did EMDR on accident for the first time.
Speaker 3:And I know that talking to the new lady is not gonna be like talking to the therapist. And I know that there
Speaker 1:are things we're not gonna tell her the same as we would tell the therapist.
Speaker 3:And I know she's gonna do things differently and that
Speaker 1:we have to be brave and keep going, but I also know we're gonna be okay. And I also know we can do this.
Speaker 3:The therapist kept my story safe when they talked today. The therapist didn't tell her any content, and the new lady didn't ask, which was good and right. And I know right now it feels like we don't want to tell her any of those things, but knowing how to hold it safely and who to tell and when to tell is part of keeping things safe, part of keeping us safe. And now I understand that that's okay because now time is safe and we can still see the therapist's office. And now, somehow in an inside out kind of way, I can go there anytime I want.
Speaker 3:And so then I felt bad for being angry about having to leave, for resenting my family about it, for being mad at God. Because I know that even if we learn a lot, even through the podcast, which is still embarrassing, learning about it is not the same as experiencing it. And learning about it doesn't make it go away, but understanding it helps. And having a safe place on the inside, even if it's still being able to go to the therapist's office just to play football. Maybe that's okay too.
Speaker 3:Important even. I still miss her. I miss my friends who live far away, except I'm the one who lives far away. But at the same time, I'm learning that even though it's a hard thing to feel, even though it's a hard thing to tolerate, that I'm actually okay, and my friends are okay, and the therapist, she's still there, and that being awake and present and aware is the best thing I could do for myself and my family, but especially myself. And so if participating for them and with them is the right and good and healthy thing, then I'm doing okay even though I'm really uncomfortable.
Speaker 3:And so now it's like the end of the never ending story where the boy just has to say the name and then everything's okay again. It's exactly like that. I just have to say her name or write it in my notebook even if there's not a therapist to give it to. Or like God where all you have to do is call out and help is already there. I don't know how to practice my EMDR muscles when I'm not at therapy.
Speaker 3:She said that's my homework, but I don't know what to do other than thinking about the office and trying to remember it and know that I'm safe, which must mean it works pretty well because I think the therapist was trying to teach me that for three years. But if something's clicked, then this is a whole new ballgame, as they say, as someone says, as Jean Marc says, as I say, and maybe we all get a badge for that.
Speaker 2:Thank you for listening. Your support of the podcast, the workbooks, and the community means so much to us as we try to create something together that's never been done before, not like this. Connection brings healing, and you can join us on the community at www.systemsbeat.com. We'll see you there.