SYSTEM SPEAK: Season 1, Episode 1 (15 minutes)
This is Em, and it’s been a really hard week. Not bad, just hard. I’m going to try really hard not to cry today. I felt silly for crying through the whole time, the first time I tried to do a podcast, and I don’t know how to take it down. But I also felt a lot better after I did it.
But I listened to the podcast from yesterday with Sasha, and I'm sorry that she had trouble concentrating, or talking. But it was the first time I was really trying to fight her to stay out, or even knew that I could. I wasn’t trying to be difficult or cause problems, I just really wanted to be present with my children. There’s so many times that we can’t be together, or I can only be with some of them, and it’s just important for me to be present with them when I can. And so if they’re playing on the playground, I need to be with them. I don’t need to be doing a podcast. Multitasking is okay when it’s about the task, or maybe I'm just a hypocrite because I was braiding my daughters hair while I was in therapy. But it needed to be done, and she was okay and couldn’t hear us, and so that’s not the same as multitasking when they need us present.
So I was really frustrated, and I was trying to be present, and if I can look at the children, and stay with the children, then I can be more present. But that's actually something new for me that I've been learning, is how to be present and stay there, but also I'm learning how to feel when the others are closer? And I don’t know how to talk about “closer”, because I don’t mean like, geographically close. Like I know there's not actually someone in the back seat, or someone across the room, although, like, there are times that I’ve seen them. I just… I don’t want to be hallucinating. I know it’s not the same thing, but it feels like it, and I don’t want to be crazy. *takes a couple deep breaths*
I don’t… I don’t want to just cry today. But I’m also learning about things that I can hear them say, or… so I'm trying to learn when I can feel them closer, what I can do, or how to stay present, and I don’t know how to explain it, or how it works, or why it works, but I know that the peppermint helps. I've never had peppermint tea before, and the oils just help me breathe it and feel it, and it calms me down. And so I'm doing it. But then, a couple weeks ago, or a couple months ago, I don’t even know… the therapist was helping with some of the littles, or something was going on, some kind of rescue mission… I don’t understand, the attic something? And it was a really hard session, and it was a really intense session, and at the end of it, she gave us a peppermint. And... like, a peppermint candy. And it helped so much. And it grounded us so much. Like, we were spinning out of… like, I don’t even understand what was happening. I don’t… I don’t know. It helped. The peppermint helped. And it helped everybody, and things calmed down, and quieted down. And I don’t know why it was such a big deal, or why it worked, but it did.
And so we have the bear, and we have the watch, and we have the notebooks, and we have her letters, and the peppermint, and somehow, that has helped enough to make things safer, and to make things more connected, and easier, and I don’t get why it works, or why how it works, but it does. So that's why I have peppermints in the car. And why I have peppermints on the desk in our room, and by the chair where we read, and the living room, and in the kitchen. And there’s peppermints because it worked, because it helped, because all of those things together somehow helped us remember that the therapist is real and we can connect to her. And for me that's a big deal because I really fought against it, because I didn’t want to know all these things, and I didn't want to be crazy, and I don’t want to struggle like this, but I have got to function. And I cannot lose my mind because I have the children, and I don't want to be in trouble. I want them to be safe, and I don’t want to be in trouble or cause problems. And, I just… I just want to be well.
So I'm trying hard to learn, I'm trying hard to process, and to participate. There are things that they say on the app, I look at the app, I'm trying to interact on the app, and talk to them, and learn about them. And we have the notebooks. I am learning when I hear them… who is who, and what they're saying, and what they need. And I'm trying. I really am trying.
But I wanted to see the therapist. I needed to see the therapist, and I’m sorry if my issues are not as important as what everyone else is working on, or whatever else is going on, internally, or however that is explained. But I cannot function if I do not get some help. And I need some help, and so I had to talk to her. And because we had the snow days, and got stuck there, I got to see her two times in a row, and it really helped me. We didn’t even… I mean, I don’t know that I even did anything important. But I talked about our parents, and I talked about our grandparents, and our aunts and uncles, like just who is in our family, and what they’re like. So I don't even know that it was important, I didn't even talk about important things. But it helped me, and it helped me actually have a conversation with her, not just hide from her, or avoid her, or be scared. Because I don't mean to… I want to get better, I do.
I mentioned to her about our nightmares, and I talked about how like, there’s really bad things in our nightmares, and she was talking about how some of that is real, and that she knows about it already. And... I didn't know that those things were real. Like, how could you… how, what? When I think about some of the things that I dream about, or that I see sometimes in the day like… like, nightmares in the daytime, they… it’s so bad, and it’s so horrifying, and I think, “How could you do that to a child?!” On my worst day, in my worst parenting moment, I would never think, “Oh I should do this to the child”. Like, what... where does that come from? How is it possible?? There’s no way these things can be real!
And now I'm having problems because... my children. I watch them grow up, and I see them at these different ages, and maybe it’s like a trigger or something. The therapist taught me about the triggers, I understand about the triggers, and so maybe this is one. Does that count as a trigger? Because I see them and I think… I see them, and I get these flashes of what can happen at that age, or what… I don’t know how to explain it, but... how could you do that to a child??! *sobs* *takes deep breath*So I've got to be able to work through this because I've got to be well. But she said that some of it’s real. And it really happened. *softly cries*
She also... and she also let me ask some questions. I mean, she was looking at the notebook, but it gave me the opportunity to ask questions. I kept getting interrupted, I couldn’t talk too seriously, which was fine, I didn’t want to just cry the whole time. But I couldn’t talk to her too seriously because I had my four-year-old with me. And... so we kept getting interrupted, and she did really well for only being four, but *deep breath* And my ten-year-old was with her, and so they were okay, like, they were safe, I knew it, but also she kept shutting the door. And the slamming of the door was really loud, and it really, I think, triggers me. it’s a trigger, except I knew it was her, so I was trying to remember that that was just my daughter, and everything was okay. But also, I had to check on her, and so we couldn’t stay for our whole session, and it kept getting interrupted, but it was the best I could do. And maybe I should have canceled instead of wasting her time. So I was super embarrassed, and felt ashamed, except that, I need that. I feel better when we go, even when I don’t remember what happened while I was there *sobs*
That feels so crazy, and I don’t know why that matters. I don’t know why it’s a thing, I don’t know how it’s a thing, I don’t understand. But I knew that going would be better than not going, even when I couldn’t do it well. But she was really patient, the therapist, and she was very kind to let us come, and gracious anyway. And she didn’t act mad, even if she was, she didn’t act like it.
So we just did our best and talked. But when she was looking at the notebook *practices deep breathing for grounding/mindfulness* When she was looking at the notebook, I got a chance to ask her some questions. Like, I want to know why is there a boy one, how can there be a boy one. I'm a girl, my body is a girl, how can my mind think that I am a boy? And I don't understand why there would be... how that’s a thing. But she said that that’s not unusual, actually, and there's lots of reason for it. And about feeling stronger, and protective, and some different things. And so I don’t want to go into it right now, but she was... she did actually helped me to answer that question, and feel better about things, I guess.
Um, I also asked about littles and how that can be possible because there’s scribbling in our journal, in the notebook, and colouring, and different handwritings that are not... some of them are so little, and I don't understand. Anyway, she explained that to me, about them being stuck, or not knowing they can grow up, or trauma things, and I don’t know, it helped a little bit. I was glad I got to talk to her, even if I wasn't able to talk to her about important things. At least I got to see her, and know, like, it’s okay, I guess.
But also, I saw in the app that it was a good time for me to go, because they knew I wanted to go, really I needed to go, and I said so. So that was like, that was brave for me, and a new thing, because I just told them on the app where we can chat... I just said that we... I need to go, like, I'm going to lose my mind *sobs* And they said it was a good time for me to go, anyway, because we need to not work on hard things because we’re going to miss seeing her over spring break. And so, they were shutting it down. Like, I don’t know how that works, or who was doing what, but shutting it down so that we don’t talk about hard things, or get things stirred up before we don’t get to see her. So I guess it was good timing, but I didn't mean to waste her time and not stay.
She also told me the one that like, just scribbles… she said that that’s something about pre-verbal something. I don’t understand yet, but it helped me know that it’s just okay, I guess, even if I don’t understand how it works, just knowing that it’s okay helps. She said that she wants them to keep writing, just let them keep writing. I don’t know how to stop them, so… I tried in the beginning, I did try because it was really scaring me, and so like, I would throw it away, or try to get rid of it, or tear it up or something. But I wasn’t trying to be mean. I didn’t know it was making things worse. I thought I was just trying to make it stop. I don’t know how to make it stop! *cries and takes deep breaths*
I guess part of what helps make it stop is like, triggers, but they’re good? I don’t know what it’s called, like good triggers? Like the peppermint, and seeing pictures of my kids, like on my phone. Or, getting to be with them, and focusing on those things. And staying calm that way has helped me be a better mom. And so, I am trying, I really am.
But I don’t understand everything. Like I don’t understand why we take our shoes off all of a sudden before we go into therapy. I don’t understand why we think we’re going to be in trouble. But I did ask that, or say that, and the therapist said we’re never going to be in trouble. And somehow, it was like I almost believed her this time. I don’t know what makes it so hard *deep breath*
But why we were down there, part of why we got stuck down there, is because my daughter coded again, and had to be in the hospital, and we got stuck. And it’s so traumatizing, like it’s whole… you feel so helpless watching her, and it’s so hard for her, I can’t imagine what she’s going through. But then, why we were there, I realized that some of that is what triggers me, too. And so, I told the therapist, I said it to her, that I had this realization and want to talk to her about it in therapy. I don’t need to talk about it to her on the phone, I just didn’t want to forget, or lose what I had learned. And what I realized was that it was a trigger for me, I think, just to be stuck in that room. Like, I want to be with my daughter, I don’t mean that I don’t want to be with my daughter *sobs* But to be stuck with her in the NICU or the PICU, and those tiny little rooms and not be able to leave for a month, and three months, and six months, and then three years. Like, it’s been really hard *sobs*
And I think for me, being stuck in the hotel for those two weeks, like, also felt the same, like, of just being trapped. And I felt trapped, and I got very emotional, and it was very hard for me to stay calm. And the weather was bad so I couldn't even take the kids out. *deep breath* But that trapped feeling… I just, like, I was just locked in there and... so, that was hard.
But the other thing that I realized was also a trigger, and I also told the therapist, was having to hold my daughter down during medical procedures *cries* That’s really hard! Like, I know they’re helping her, I know that in my head, but she doesn’t understand that, and it doesn’t feel like it to me, even if I know it in my head. And there are some things now she doesn’t even fight anymore because it’s like learned helplessness or something, and she just knows that she like, can’t get away, and so she doesn’t even fight them on it when she should. And I don't want her to go through that *sobs and deep breaths*
Some things are better because she has a g-tube, and so, at least the g-tube is better than when the NG tube would come out of her nose all the time. And so, like some things are better. But I don’t know how to work on these things that are happening now, even why we’re trying to work on things from the past… like, now time isn’t safe for me. Time is not safe for my daughter. I don’t know how to make now time safe when there's still hard things happening.
And so I need to talk to someone. And I realize that it’s like before the first time when we tried to do therapy, we were in a really bad relationship. And we were so young, and we were not safe. And so, all of therapy was always about that. And we had to fix that first before we could do other things. And that’s what this feels like. So, even though the therapist is really good, and even though she really helps, and even though we want to stay with her, I need more help on this now because I can’t deal with it. And my daughter dying, and then not dying, and then living longer than they thought, and she’s still here, but still almost dies. Like, it’s so traumatic. And it’s traumatic for her, and it’s traumatic for my other kids, and they have therapists, but I don't ever get to talk to anyone about it. And I don't get a turn at therapy because they’re talking about real things, instead of me just freaking out about this, that I can’t do anything about. *sniffs*
So now the hospital says that I have medical PTSD, and that they have a support group for it, and I'm supposed to be going to this. Except I'm too scared to go, and I can’t tell them I have another therapist because I don’t want them to know about the DID. But also, I don't get turns with the other therapists because they're working on real stuff, so I don’t know what to do.
We’ve canceled the appointment with the new therapist, the group therapist. Like, we have to go see her for an intake and then we can go to the group, but we’ve canceled it like, three times because we’re too scared to go. But I'm scared to not go, because I don’t want someone to call family services on us again for being non compliant, even though we are being compliant. This is the one thing that I'm not doing, so I've got to do it. I know I hardly have a choice, and so when I was at the hospital and I was thinking that these two things maybe are triggers for me. And so maybe that's what I could talk about in that group, or work on with that group therapist. Even though we still keep our real therapist.
And I realized… and so I sent the therapist those two things. But then I also realized that I think there’s another one. I think the other trigger that I have all the time with my daughter is that like, when she codes and we get life flighted, what they do is strap her to me, and strap me to the gurney, and put us on the helicopter. And I don’t get to take my luggage, I don't get to take anything with us, like there’s no time, its an emergency, right? You have nothing with you. But when they fly us a thousand miles away, and I'm stuck in that tiny hospital room with nothing for three weeks, or six weeks, or six months, and don’t have money for food, and have to beg the ladies, or other people for ways to wash my clothes. And I don’t have other clothes, and no money to go get more clothes. Like, to be trapped in that room without food, and without enough clothes, or can’t even leave to go to the bathroom sometimes? Like, I'm not trying to be gross, I'm just saying, all of this and getting strapped down to the helicopter, or in the ambulances... because they don’t have car seats in the ambulance, or in the helicopter. You don’t take your car seat, they just take her, but she’s too small to be on the gurney by herself. And so she has to be strapped to me, and then they strap me down. And so like, there’s these leather straps that go around my feet, and around my knees, and around the top of my thighs, and then around my stomach, and around my chest, and it’s like, too much, and I just can’t do it anymore. *sobs*
So I think… like, I'm not... I don’t want to talk about our private issues on here, as far as like trauma things. But I feel like those are three things triggers that are happening now, that are causing me problems that are not now time is safe, because its not safe for me when that keeps happening. And I know it’s not important, it’s not like we’re in a domestic violent situation, or something like in the past. Like, the husband is very good and very kind, and like, our daughter is still here with us, and I'm grateful, so I don’t mean to complain. But there’s no one who understands how hard it is, and there's no one who listens, or who wants to talk about those things. And I think they’re triggers for me, except I don’t know why they’re triggers… I guess they're not triggers because it’s now time, it’s happening now, it’s not memory time. But those are the three things I just can’t handle anymore. Like, I'm done, I can’t do it anymore. And I'm feeling my brain is going to break.
Except we live in this big city. Like we moved from Oklahoma, and in Oklahoma, like everything is rural, and even in the city, like where the therapist is. Like, we knew where her office was and how to get there. And you walk in and there’s directions on where she’s at, and what floor to push or whatever and so, I can do that. Here, you go and like, all the buildings are the same, and they're all these creepy, old brown buildings. And maybe that’s a trigger, too, because it reminds me of something that I can’t remember what. And I'm tired of not just being able to function in the world. Like, how hard is it, to go into a building? Why does it take me an hour to get into the therapists’ office, after I've already parked the car? Why does it… why are these creepy, brown buildings creepy? They're just buildings, they shouldn’t have an adjective for them... they're not… they’re just buildings!
Why is… just normal things hard? I don’t even know! And so I'm going, and I'm supposed to do this intake with this therapist, this new therapist, who’s also a nurse, and so she runs this support group for medically fragile kids and chronically ill children, for their parents. And so I'm supposed to be going to this, and I get on the elevator, and they're like sterile, hospital elevators where... for the gurneys to go on, because it’s by the hospital. And then, the elevator doors open, and it’s these long hospital corridors, like, it’s so triggering just to get in there… and so I started to panic, and I couldn’t do it. And I ran by the restroom, like they had this little area, a waiting area, by the restroom where I could get a drink of water. Like, I tried to calm down, but I couldn’t. *cries and gathers composure* I couldn’t.
And so, I decided that even though I'm always embarrassed, and I'm always sharing... and if I share something with the therapist, or text her, it’s because I'm sending a video of the kids, or a picture of the kids, because I don’t know how else to reach out to her. But today I needed help, and so I just said like, “I’m going to die from a panic attack.” And, she actually replied. Like, I didn't keep talking to her, but she replied, and it reassured me enough to like, go in. Like, I had the courage to go in, and I could… I was really proud of myself. But when I walked in... when I walked in, it was like this big clinic like, with psychiatrists, and a waiting area, just like in a hospital. Like, it was the last environment that I needed. It was so cold, and it so awful. And I didn't want meds. Like I just, it was not the environment I wanted. It was like the opposite of the therapist’s office. And not just because she’s better than everybody, ‘cuz she is.
But it was terrible, and I couldn’t do it. The lady at the desk, you had to check in at this desk, and she wanted a copy of my ID, and a copy of this, and a copy of that, and I just couldn’t. I just said, “Just a moment”, and I stepped away, and then I ran out. And I ran down the stairs. I didn't even wait for the elevator. And I ran out to the car. And I just sat in my car and cried. Like, it was too hard, and it was too scary, and I couldn’t do it *deep breath*
But then, it started to rain. You guys, it started to rain. Do you know what that means? It means there’s hope because it wasn’t snow, it was rain, and it has been snowing here since October. And I'm sorry to be... I'm sorry that this has been such an issue for us, but we’ve never had like, this intense of an experience of winter, and I think it triggered something else. And I don't know what that is about either, and I don't even want to know right now. I just saw the rain, and so, even though it was a cold day, it was warm enough that it was raining, and not snowing. And so then, I just started to cry, and to laugh at the same time. And it was like, just hope just washed over me, and I just stood in the rain.
So I emailed her, and I told the lady what happened. And she met me at the elevators and took me into the office the back way, so I didn't have to go through the waiting room, which was very kind of her. And she’s this tiny woman, and she was wearing cowboy boots *laughs* And I don't even know what happened, and I can’t talk about it, or I won’t be able to stay present. I can’t even talk about it. But for John Mark, the cowboy boots were like a sign of the therapist and it was that everything was going to be okay. And so it was like, for the first time, I felt him help me. Like, he wasn't out, but I could feel him, and he helped me get in there. And we got into the office, and answered questions, and it was actually easy. It wasn’t anything about the past, or anything hard from the past, or anything intrusive like what we talk about with the therapist. It was just about our family and our children, and their medical diagnoses, and all of them had different stuff. And so, like we just talked about those things for the last twenty minutes because that's all the time that was left. And she was just sitting there with her mouth hanging open. She was like, “I don’t know how you can handle all of this at once. Like, just one of these stories would be medical PTSD, and you have six of these stories. Plus, the daughter that’s dying.” And so, she was just… like, tears were just going down her face, and her mouth was just open, and she was like, “How do you deal with this?” And I was like, “I don’t deal with it, that’s why I'm here. Like, we just have to, it just is. We keep our kids alive. That’s my job; I keep my kids alive. And I don’t know what to tell you.”
So, I guess, we made it through that, and I was able to, for the first time, talk to the others, and with the others, and feel them help, and resolve some things. Not anything big, but like, got through that appointment. I got through appointments with the therapist, which I needed, and so I got to have that. And so, I'm feeling better, although now, I'm going to have another crybaby podcast, which is not what I meant. But if I listen to it again, and if they’re listening to it the way I listen to theirs, like, it’s helping and it’s making a difference. So I needed to explain and share some of what’s going on.
The other thing that helped was on that app. Being able to talk to them, not just in a notebook, but seeing who is who, and learning more that way about little things, or every day things. And Molly sent me this quote, and it helped the way John Mark helped me get into the office to do that appointment. And so I want to read this quote that she sent. It does reference God, but it’s not like, preachy, but... I just want to warn you in case you don't want to hear a God quote.
It says, “Because adversity introduces us to ourselves, I am the woman I am and have the perspective I have through it all because of this heartbreaking, dream shattering ordeal. I learned that if you do today what others won’t, you can accomplish tomorrow what others can’t. Only you and God know your full capacity, and how high He has set the bar specifically for you.”
And that reminded me of something that's on the wall in the therapist’s office, that is about doing today what I can’t, so that tomorrow I can. I don't know what the exact quote is. I can’t remember. There's somebody who really likes it, and every time I try to remember it, they say it at the same time. And then I can’t say it right because that’s so distracting. But I'm learning and I'm trying.
I made it through today doing things I didn't know I could do, and feeling better because of it, even though it was really hard, and really scary. But part of what that was, wasn't just fixing something, which is what I thought I needed. Part of what I've learned in the last week or two with the therapist is that it’s okay to just need help. And it’s okay to feel overwhelmed, or upset, or sad, or even mad. And it’s okay to ask her questions and want to understand more about what’s happening and why. And that it’s okay to talk about those things. And that maybe she really is there, and maybe she’s not going to just get mad and fire us. And maybe she’s not going to just quit or disappear. I mean, I'm an adult. I know real things happen. I know life happens. My mother was killed by a drunk driver. Like, I get that things just happen that you can’t control.
But I think that it feels somehow, even though it will be hard and scary, that like, after spring break... like, it’s going to be a new season of therapy. Like, it’s going to be a new season of us learning. I don't know how, and I'm terrified, but I know it’s time, and I know that we’re ready. And I think the piece we can hold onto is that now time is safe. And when it’s not, like with real life, like my daughter, for example, then at least we’re not alone. And at least we know where we can ask for help, even if it’s hard to ask for help. And maybe we can get more help in different ways to be able to deal with some of these things that are real. And if these things that are real are this hard, then maybe the rest of it’s real, too.
Thank you for joining us with System Speak, a podcast about Dissociative Identity Disorder. You can listen to the podcast on Spotify, Google Play, and iTunes. Or follow along on our website: www.systemspeak.org
Thanks for listening!