Conversations with emotions

[00:00:00] Speaker A: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn't feel like something you want to explore today, you might want to visit another podcast and come back to us another time. [00:00:13] Speaker B: Discovery College acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty. [00:00:31] Speaker C: I saw someone and I was like, do I know you? And I said, I'm not trying to pick up on you, but do I know you? And they were like, yes. We've actually had this conversation in the last couple of years before you've told me that you have amnesia, so I know you have amnesia. Something about that conversation just broke me because I think that was the first time that I realized that even this stranger that I barely knew knew more about my history than I did. And I had a breakdown in that club. And that's when I actually truly understood just really how much I had lost. [00:01:11] Speaker A: I'm Lucy. [00:01:12] Speaker B: And I'm Rachel and we're the hosts of the Extremely Human podcast. [00:01:16] Speaker A: Sometimes we move through big human experiences that others might not understand, like psychosis, grief, addiction, euphoria, or moments that feel completely unreal. [00:01:28] Speaker B: On Extremely Human, we hear from people who've been there and share what they've learnt along the way. Together, we ask, how can we meet the full range of human experience with kindness and compassion? This conversation with Sisuella explores what it was like to lose her memories after intensive ECT and begin again. They reflect on how they found meaning through peer work, the impact of genuine support and the importance of trusting your intuition. [00:02:11] Speaker A: Thank you for joining us, Sisuela. It started off as a little bit of a wobbly start to the day when I walked into the studio and everything was unplugged and we didn't know if we were going to be able to record and. And you came in and I was like, do you have any tech skills? Because we can't record. And you actually, you saved the day. [00:02:30] Speaker C: Essentially, we figured it out. I definitely liked your escape room analogy because it felt like we figured out clues step by step and we got excited each time and when we figured it out, I did a little dance, so it was actually kind of fun. [00:02:44] Speaker A: Yeah, good way to ease into the pod. So, Sisfela, can you tell us a bit about yourself or people who don't know who you are? [00:02:53] Speaker C: Yeah, I'm Sisuela. I use she, they, pronouns. I'm A consumer peer worker in the public mental health system. I'm someone who has experienced quite a bit of mental ill health and trauma and literally had my life kind of like broken down to nothing. And I rebuilt it, and outside of that, I learned how to be a person again. I like reading. I have five cats. I love giving random facts, but it can't be. When you ask me, it just has to be naturally occurring, which is why I suck at trivia. [00:03:27] Speaker A: I say you're a very eclectic human being. [00:03:30] Speaker C: Yeah, I get that sometimes. [00:03:33] Speaker A: Thank you so much for giving us that little window into who you are. We're now in season two, so we thought we would choose a bit of a different warm up question just to see how it goes. So the question is, what's something ordinary that's felt beautiful to you recently? [00:03:50] Speaker C: So I have five cats. I have a cat net at the front, so they can go to the front garden, but they can't leave. So they can explore outside but be safe. And I absolutely love just watching them being in the grass and being shaded under the tree and just doing cat things. I just find it so beautiful, even though that's just an ordinary thing. [00:04:13] Speaker A: Do you think cat people are more entranced by their cats than dog people? [00:04:18] Speaker B: Ooh, different. [00:04:20] Speaker A: Rachel. [00:04:22] Speaker C: I think it's a different. I think it's equally as intense, but different types. [00:04:27] Speaker B: Yeah, I agree with you. I think I used to be a dog person, but that was only because I'd only ever experienced dogs. And now I'm a cat person. I think because I've figured myself out through my relationship with my cat, I'm actually different to who I thought I was a personal therapist. [00:04:45] Speaker A: Yeah. [00:04:46] Speaker C: I had a friend who told me that cats showed them what boundaries meant and, like, help them understand and appreciate boundaries. Because, you know, you can't touch a cat unless a cat wants you to touch them or pick them up unless they want to be picked up. So understanding boundaries and respecting them. They really got a lot from that experience with having a cat around. [00:05:09] Speaker B: Oh, that's so true. I like that. Well, welcome to the podcast, Isabella. And you know, we know this is a podcast where we try to talk to people about experiences of extre states. Can I ask what that means to you? [00:05:21] Speaker C: It's meant a lot of things, but for me, I've seen things in the binary of extreme happiness or elevation and extreme depression. My experience was that I couldn't feel things in real time. I realize this now on reflection. So sometimes I would actually feel a lot of feelings that had hadn't been processed in the moment. And it would kind of bottleneck, and it would come out kind of like a volcano, and it would feel warm inside me, and it felt like it just needed to come out. And it was also the same for the happiness. At times when I was happy, I just felt like. I feel like I'm getting too excited or feeling too many emotions. And it feels good, but it also feels scary. Like, when. When am I going to come down from this high? And also the fear. The fear of I've gone this high, I'm now scared about the preceding low is going to be. And not knowing or understanding that extreme states actually can be normal. They're not some mythical thing that we don't. We can't help or understand or that I can't be in control of. Not to say that I want to be in control of my emotions, but to. To understand how to kind of guide my emotions so that I'm not going as high or as low so that I can be safe. [00:06:44] Speaker B: Thank you for sharing that. The idea of the volcano really brings it to life in my mind about what that experience internally is like for you. [00:06:53] Speaker C: It really felt like magma, honestly, in my abdomen, and it just felt like it needed to come out. [00:07:00] Speaker B: Yeah. [00:07:00] Speaker C: Another quick analogy is that my OT will always say to me is that it's like the Coke bottle, and she was saying that we need to just open the lid just ever so slightly to let the gas out a little bit so that it doesn't spurt up when you open it completely. And that's one of the ways that I've been using to kind of make sure that I'm feeling emotions regularly and slightly so that I don't overflow. [00:07:29] Speaker B: That makes a lot of sense, too. [00:07:30] Speaker A: Really cool analogy. I'm interested in what you said, Cesuela, because you were. When I think of extreme states, I might associate that with a lack of control. But you were speaking about it's something that you can get a little bit more control over. [00:07:45] Speaker C: Well, I think my time in trying to get support for my mental health was all about them trying to control my emotions through medication or telling me that my emotions were essentially a diagnosis. So therefore, I interpreted that as being something bad and that it was out of my control to fix. So when I talk about it being something in control, it's more about understanding myself and my capacity and my boundaries, because I realized that a lot of my emotions was my body trying to communicate with me. Hey, what I did before, I wasn't actually okay. With, but I didn't feel safe to feel it in that moment. So it's coming out on this completely unrelated topic. And at the time, I didn't understand. I thought my emotions were just this wild, uncontrollable thing that I had, you know, no control over. But really I just had to learn the language of my body. And by doing that, I was able to. And this is why I didn't. I didn't want to say I can control my emotions because I feel like a lot of people when they hear control emotions, they hear shutting down. And that's not what I mean. I just wanted to guide my emotions or listen to them more so that they. My emotions didn't come out in big reactionary experiences. And it was more like a conversation with my emotions instead of a shouting match between myself and my emotions. [00:09:10] Speaker B: I really liked what you said about it being normal, you know, because when you hear extreme states, it can feel like there's something abnormal about it. But everybody has changing states in different circumstances. [00:09:25] Speaker C: Everyone loses people. You know, people die. And our society says, well, you need to go straight back to work. And then people are grieving for a couple of years and they think that's unnatural because we just haven't kind of given people the space to take their time to grieve or to talk about it more than once. I feel like a lot of society kind of expects you to have a conversation about an emotional situation or an extreme state and. And they hope that that's the last of it and that's just not the case. And for people that are continuously feeling big emotions but don't have an outlet for someone to talk to so that they can understand. I feel like that actually builds on the extreme state and makes people feel worse over time. [00:10:09] Speaker B: I mean, create norms and kind of about. And rules. Like, I think about grief. How many times do we hear, this is how grief looks like? This is the stages you go through and this is what comes next. And I don't know, there's not always everyone's experience. Is it kind of going through something different? [00:10:28] Speaker C: Yeah, definitely. I mean, and that's the most, you know, chopped down version. And if you add, you know, cultures and intersectionality and all that stuff, it really. Everyone's experience is different. And we all try to say, no, this is the only way. Or the amount of experience that you can have or emotions you can have, I find that very bizarre. So my experience with extreme states as well, to me, it was a lesson in. I was living a life to conform to others, which actually produced the extreme states because I was angry at myself and I didn't understand why. And as soon as I started living life more authentic to my intrinsic values and, yeah, just being more honest about how I wanted to live, then surprisingly, I didn't have as many extreme states or I just stopped shaming myself. You know, I cry now without being like, why am I crying? You know, I let myself cry and be like, my body just needed it. And I find that I move on a lot faster because I'm not doubting my experiences as much. I'm just letting them flow naturally. [00:11:47] Speaker A: Siswell, I'm really interested to hear what life was like before things began to change. [00:11:53] Speaker C: Yeah, so growing up, I was very outgoing. I loved dancing. My mum used to say that I would literally dance all the time, like going to shops and I would be dancing down the aisles. I was a very academic student. I was straight A's, top of the class kind of situation. I loved socializing. And that was all up until in the VCE years, like year 11 and 12, when my mental health started to deteriorate due to the stress of studying. [00:12:24] Speaker B: Stress of studying is something that most people can relate to at some point, but what was going on for you at that time when the stress started to affect you? [00:12:33] Speaker C: So, as I said, I was a straight A student, but that just came naturally. That's going to sound really egotistical, but I was able to do things well without studying much. I was able to learn facts and things and recall them quite easily. But when it came time to VCE years, I think with the exams and the pressure that I put on myself, I never had pressure from my family. They were never, you must get A's. However, I did get a lot of praise for my. From my family for my academic achievements. So that's how I got attention or how I felt. I got positive attention. And so I put that pressure on myself to get the perfect score. And when I felt that I couldn't achieve that with exams and the actual, actual practice of studying and trying to prepare for a big exam, I crumbled. And I feel that's when my mental health started to suffer. [00:13:44] Speaker A: And what happened at that point? [00:13:46] Speaker C: I started to look at just random things for me to do. So I decided to become a personal trainer. I wanted to work on a cruise ship. I just, I started floundering with every time that I felt like I was failing because I would only last at a place, you know, three months or maybe a year or something before moving on to the next thing, I just felt like a failure. I was told growing up that I was destined to do great things. I was told I was going to get into Melbourne Uni. I was told I was, you know, just very bright. And so when I felt like I was not meeting those expectations, I just crumbled. I stopped having interest in doing things. I started, you know, using substances to escape from the pain, spending money, a lot of money. My credit card situation was insane for a couple of years because that was a way of me regulating, and I didn't recognize it at the time. And I actually couldn't get out of bed one day and my mum would have to drag me to the shower just to try to wake me up. And then they eventually, after a couple of months of me not getting better, diagnosed me with bipolar type 2. And then when that didn't fit the bill, they diagnosed me with bipolar type 1. And that was around 24. So I had been dealing with this for quite some time. Going into the mental health system was the start of me getting even sicker. When I was getting treatment from private psychiatrists, I found that they would just medicate me, which is their role. But when I would say something wasn't working or I would come back and they would realize that my, you know, mood hasn't. Hadn't stabilized, they would just keep adding more and more and more medications. I had a psychiatrist that was, you know, near the end of my time at mental health, at private Mental health. I was on 24 medications at one point, and they were changing my medications sometimes weekly. And we know that these medications take a long time to take effect and for the body to kind of equalize. And so I just. I cringe at thinking about the fact that this person was changing my medication sometimes on a weekly basis, and then seeing my reaction to those medications being that my body was struggling to regulate this new change, and then being like, oh, okay, well, we should just change your medication again. And so my body never really was given an opportunity to figure out how to, you know, deal with all of these things in my body. I honestly felt like I was rattling. Like, you know, my day was dictated by, you know, what medications I needed to take at what times. I never really knew who I was because I was honestly just reacting to all these medications. I lost who I was and when I was already in pain, reaching out for support, and they essentially gave me so many costumes and masks to put on that I could no longer recognize what I was without at all. It was extremely distressing. And for doctors to tell me that I just needed to try harder or that it was my fault because of XYZ reasons. It made it a lot harder to want to keep going. And I was extremely suicidal during those years. I was seeking help on a weekly basis, which is a lot of money when you're not working. Because by this stage I wasn't working. I did things like TMS and then later on ect. ECT is electroconvulsive therapy. What I say to people is that imagine movies from the 60s where they've got an Assane asylum and they're dragging a person away into a room where they're shocking their brain. That's what I had. But it's a much more modern version where they put you to sleep and they induce a seizure and you're meant to do it on one side only. But the doctor that I went to was convinced that they had found this new way of doing it called bifrontal. And so you had one node on the side and one node on the front and it would hit both spheres of the brain. I had 12 sessions. So you do three times a week initially, and I had good results for about six months. So it resets your brain. So if you're feeling a lot of feelings, it's kind of like a computer. If your computer's starting to bug out, you turn it off and you turn it back on again and it fixed itself. That's what it was like with ect, at least initially. So for six months my mood was better, but that was because I couldn't remember anything. And then as I started to remember things again or started to kind of connect with reality again, because you're very sluggish during these times, you can't remember things. Your short term memory is a little bit short. Once you come back online, everything that you were dealing with before the ECT comes back. And I started to feel in trouble again. And so they did another round and that worked for three months. And then they decided to just do weekly sessions. And then on top of that they started doing the rounds of 12 and then in between doing weekly sessions. And that went on for 20 months. And I can never quite remember the number. It's either 84, 85 or 86. So it's somewhere in the 80s. But I had that many sessions in 20 months and I lost all my memories. So I can't remember my memories from birth to 29 years. All memories or all experiences that I talk about from my younger years are from what people have told me or just what I kind of know about myself because my personality is the same. It's just that my emotional memories from everything before 29 years has been lost to me. I believe that they're still there. I feel like there's a bridge in my mind that's been burned down and I just need a way to kind of like rebuild that bridge. But during that time, it was extremely distressing. I knew who my family were, I knew who the current friends in my life were, but I had no emotional connection to them because I didn't have any of those memories bonding me to them. And that was extremely distressing. I had to literally rebuild my relationship with my parents and my brother and my sister and my friends. It was really hard trusting that they were telling me reality, which is impossible. Everyone has their own version of reality and events. But I was always wondering, are they telling me a version of a story to protect themselves, to make themselves look better, or to protect me because they don't want me to feel emotions or any other reason? That was an extremely tough time. And when I would tell doctors this, they told me that that's not possible. You cannot lose that much of your memories from this experience or from this procedure. Even though when you sign a consent form before you do it, it literally says that you can get amnesia. But they had also, every time I told the doctor, they had also never met anyone who had had as many ECT sessions in such a short amount of time. [00:21:12] Speaker A: What is, what is the standard amount to have compared to how much you had? [00:21:16] Speaker C: So technically, according to the guidelines, only ever really meant to get 12, and that's meant to be, you know, last resort. Like every other medication, every other kind of tool that they've used hasn't worked and a life is in extreme danger. Like someone who's extremely suicidal. Like what I was. Some small amount of people find it useful, but the majority of people that I've talked to have found that it's ruined parts of their life or has had lasting effects. It took a couple of years for me to recognize the trauma that I'd gone through. Initially I would laugh about it with people like, haha, lost all my memories. Like, how kooky am I? Like I guess in a way to kind of self soothe myself because I felt uncomfortable being around people and I would be like, if I name it, then it, you know, doesn't have power over me. And then it was like a year or so later I saw someone and I was like, do I know you? I'm so sorry. I'm not. You know, it was at a club, and I said, I'm not trying to pick up on you, but do I know you? And they were like, yes. We've actually had this conversation in the last couple years before you've told me that you have amnesia. So I know you have amnesia. And something about that conversation just broke me because I think that was the first time that I realized that even this stranger that I barely knew knew more about my. My history than I did. And I had a breakdown in that. That club. And that's when I actually truly understood just really how much I had lost. And fortunately, the American group had moved to online because of COVID times. And I was able to. To get support with other people who had experienced ect. And that helped me feel less alone and so much more validated because doctors here were telling me that it was my fault that I had lost my memories. I must have had memory problems before. I must have been abused as a child, which I thought was a really messed up thing to say to someone that doesn't have memories. Like, they literally implanted that thought in my head, and that's something I still, like, struggle with sometimes. I'm like, are they right? But I know I have a very loving family, so that I get really angry that multiple doctors would say that just so casually. [00:23:36] Speaker A: As I'm listening to you speak, I've literally had goosebumps, and I feel just like a wave of sadness pouring over me. And we've had Beck on the podcast. There was overlap of similarities in your story, so it's really devastating to hear that it's not not uncommon. But I'm wondering, was anyone held accountable for your treatment or mistreatment? [00:23:59] Speaker C: No, is the short answer. The person who prescribed me all those medications and the ect, I think they would say that they got disciplined for it. They were no longer allowed to be a psychiatrist. Their license got suspended. But as of May this year, they technically can. And I don't think that's enough outside of what they did to me. They did this to many other people, and that also included, for other people, sexual assault. And. And as other doctors or the. Is it vcat. The tribunal would say it was an inappropriate relationship with multiple women, and so their license was suspended, but I don't think that that's enough. So I would say no, that they didn't get disciplined for their mistreatment of me or for the many other people that they hurt during their time in private mental health. [00:25:04] Speaker B: Gosh, that's such a Hard hitting story, Siswella. My heart feels really heavy, but I'm so grateful that you can share this for the impact that it has. It's such an important thing for people to hear. [00:25:19] Speaker C: Well, I'm, I'm grateful that I'm still around. [00:25:23] Speaker B: Yeah. [00:25:24] Speaker C: There was a long time during all this that I didn't think I would make it past 30. My mum has literally done CPR on me on two separate occasions, you know, so I'm just very grateful that not only am I here, but I'm actually, I'm thriving. I'm kicking ass. [00:25:42] Speaker B: Yeah. [00:25:43] Speaker C: And I did it in spite of what happened to me, not because of how they tried and failed to heal me. I healed myself. [00:25:53] Speaker B: Yeah. Yeah. Your comments right at the start about having to rebuild your life really kind of are hitting me now. Hearing what you've gone through and that finding your way back before we hear about how you did that. Is it okay if I just ask you something else, which is, you know, what do you think people were assuming about you along in those years, that maybe they got wrong or. And how did that feel for you? [00:26:22] Speaker C: My grandma was also very unwell and was diagnosed bipolar. So when I went and sought treatment and I got the diagnosis of bipolar, I was like, well, this makes sense, you know, family history of it. And I think that's what doctors saw. They saw, well, you have a family history of bipolar, so you must have it. The label fit for them. Their treatment was based just on, I guess, the family history and what they perceived as my kind of moods going up and down when I was taking medications or when I tried to stand up for myself saying, I don't want to take this medication. I also, you know, had eating disorders at this time, so I didn't want to take medications that made me gain weight. And doctors saw that as me being difficult. If I tried to advocate for myself, I was being argumentative. And you know, the more that I had reactions to what they were telling me, telling me that me speaking up was, you know, this diagnosis. I then got the diagnosis of borderline personality disorder. So I had both. And then, you know, if I tried to speak up for myself again, then they would just saddle me with more medications because they said, well, clearly you're not, you're not stable. And I also just want to quickly say, like, what, what the hell is stable? Like, why are we aiming for stable? Like, life is about having, you know, emotions. And I feel like psychiatry is about like being devoid of emotions, which is literally like, that's not life. And I feel like that's why a lot of people who are on medication say that their life feels like they're living in the gray or living in static or they feel like a zombie. Because we're humans and we're meant to feel emotions, like that's how we connect to people and to society. But then they give us these medications that literally kind of disconnect us to society. So then we'll feel isolated, and then our mental health will suffer, and then they give us another medication to deal with that. And that was my experience. You know, I started off, you know, very fierce. You know, I was very confident in advocating for myself. I thought I knew who I was or I knew who I was, and they made me feel that I didn't know who I was. And it's forever changed me. [00:28:44] Speaker A: Was there anyone in your corner while you were going through all that? Because it's definitely so hard to fight against that kind of power. [00:28:52] Speaker C: Well, definitely my family. My family, every time I was hospitalized, would visit me every day, particularly my parents, would visit me every day. And I always think about that. I think about the fact that my family did, you know, were able to take me in when I couldn't work, were able to look after me when I was unwell. A lot of people don't have that. A lot of people have very dysfunctional families that, you know, can cause people to be mentally unwell or make their mental health worse. And I always think about the fact that I'm just so privileged that I had my family to support, to support me during that time, because without them, I wouldn't be here. [00:29:35] Speaker B: If someone's going through something similar, what would you want them to know? Or is there something you'd say to your younger self? [00:29:42] Speaker C: If I could tell my younger self something is trust myself. You don't have to know all the answers. But as long as you listen to your intuition or trust your gut or any other kind of phrase you want to put in there, you'll be okay. If you stop listening to yourself and if you stop trusting yourself, then people are going to try to help you in a way that suits their needs or fits their worldview. And that's never going to work, because we all function differently, we all see the world differently. We all have different values. And I guess that also kind of leads into what I would tell other people. It's, you are the only. You are going to be the only person that is dealing with what you are dealing with. And if you take medications or use different type of Therapies, you are going to be the only one that has to actually go through the process of doing that and have the consequences, good or bad, from going through these things. So for some people, medication is the answer and that's it. You know, they find one medication like I'm good now, I feel like that's supported me and that fits in with their values and their experience with reality and that's fine. And for some people, they may lean on Chinese herbal medicine or somatic therapy or going out into a forest and screaming really loud until they cry and that regulates them. It just depends. Depends. We all have different things that can heal us. But if you rely on other people to tell you how to get better without, you know, experimenting yourself and without trusting yourself, then you're never really going to be at peace or never really be your authentic self because you're, you're living your life according to other people's values and judgments. I don't think I've actually heard anyone describe it that well. [00:31:42] Speaker B: It's amazing. Like I just trying to marry that with that sense that you have of being so self conscious and left questioning you, you thought your ideas or not trusting yourself as a result of what you've been through. Anyway, just thinking about how both can be true. [00:32:02] Speaker C: Yes. And that's one of the other things, you know, that I had to learn which is, you know, one idea or one point of view, it's not black and white thinking. That was very hard for me and still is. You know, both opin can be true, both perceptions can be true or multiple things can be true at once. Once you realize that and can accept, does make life a little bit easier. Hard to do, but it makes life easier. Yeah. [00:32:31] Speaker B: So swell. [00:32:31] Speaker A: I've been thinking about when we first met. I didn't know your story at that point and I was so shocked to hear everything you'd been through. You're just such a bright, colorful, you're so full of life. And it just made me wonder what were the things that helped you to start to feel like yourself again or maybe in this case like a new self. [00:32:54] Speaker C: The biggest thing that helped me with feeling more like myself is finding the appropriate supports. I found an OT and she's amazing and I say this all the time to people, but. But the one thing that I think about is in our first session she said so tell me about yourself. And I listed my medical history because that's just what I was used to having to give to people who I was going to for support. And it Took up the whole hour because by that stage, I had a lot of things, you know, in my medical history. And at the end, she paused and she said, I'm really thankful that you shared that with me, and it's useful to know, but I was actually just wondering about, like, you. Like, what do you like to do? You know, what are your hobbies? What's your life like? And I broke down into tears because no one had ever asked me that, you know, in the time that I'd been seeking support. And it kind of made me realize that I was living my life defined by my diagnoses. So my OT definitely helped me to feel more like myself again because she approached my situation without judgment, with curiosity, and with patience. She approached my situation by not focusing on my diagnoses, but by focusing on my life and building my life. Now, you know, with her help, I realized I wanted to work again. I never thought I was going to make it past 30. And then I thought, well, I'm never going to work again. And then I thought, well, maybe I can work. And I found out about what peer work was, and I wanted to use my knowledge of my lived experience and living experience with mental health and recovery to help others in the same situation. And all of that came from my OT's very gentle, patient, understanding approach and helping me, you know, rise like a phoenix from the ashes of, you know, what ECT had done to me. And on top of that, you know, I. I got an EMDR counselor and, you know, I connected with her straight away, and the first thing she said to me was, have you ever been tested for autism or adhd? And I had actually been wondering about this myself. Turns out I do have adhd. Officially, I believe I have autism as well, or I'm autistic as well. I just don't have the official label. Finding the work that made sense of all the trauma and pain I went through and made it worthwhile, gave it meaning, gave me purpose. All the work that I did on myself, really intensive work to push through or to process all my trauma and start realizing that it's okay to live again. You know, I don't have to be defined by this experience. My whole life, there was a time when all I could talk about with people, when I would socialize, was my mental health, because it was literally the only thing I had going on in my life. I couldn't work, you know, I would only socialize with people if I could get out of the house. So it was the only topic I had. And then When I had the amnesia, that was the only thing that I could talk about because I couldn't relate with people with anything, but I could talk about that because people were interested. So it gave me, you know, something to talk about, but I didn't want that to be the only thing that I would talk about. And so then I worked with ot, and then I finally was able to break away with that being my only talking point. And then I started to work, and I realized I was really good at what I did. And connecting with people and supporting people helped heal me in ways that I didn't think possible. [00:36:56] Speaker A: That's really awesome to hear that lived experience workers sounds like something you connect with really well. But I'm also really interested to hear how that helped you heal as well. [00:37:07] Speaker C: Being able to be there for people and connecting with people in such a human way, giving a chance for someone to talk to me where they knew they weren't going to be judged, it was healing for me because I didn't have that experience. And knowing that I can reduce some of the trauma for these people or just connect. You know, like I said previously, that part of what I went through was isolation. So being able to connect with someone who is still experiencing the highs and lows and still figuring it out and knowing that in that moment, I'm helping them not feel so isolated and. And not feel judged and validate what they're going through, it feels like what I went through, there was a reason for it. I'm not someone to say that. I would never say that to someone else. Like, you know, everything happens for a reason. But without amnesia, I wouldn't be with my partner. And my partner is amazing. Like, my partner really advocates for me to be the silliest, happiest, most authentic version of myself. I can be so wackadoodle in front of him. [00:38:31] Speaker A: That's a word I haven't heard in a long time. [00:38:32] Speaker C: And I'm bringing it back. And he cheers it on. And he just loves me for every part of me, even when I'm down. You know, my family might be like, oh, you're not doing so good. And he'll just be like, no, she's just feeling her feelings like, it's. It's good. And he's just been a champion in my life. Funnily enough, I wouldn't have gotten together with him if I didn't have my OT being like, you can do this. Because I remember when I first met him, I said, I'm. I'm too fresh from my Healing, like, it's only been a year that I've started to get my life together. I can't possibly be in a relationship. She's like, why not? I was like, well, because what happens if I stuff it up? She's like, and what if it doesn't? What happens if it works out? And it happened to be just the best thing? You know, it turned out we both healed each other, and that was just. We've become stronger independently and together. I honestly, truly feel that without the amnesia, I would still be in the system because I would be just broken enough to keep believing that I could. That if I just tried hard enough that everything would work out, but because what happened in that situation broke me down so thoroughly, and I was so disappointed and burned by psychiatrists not wanting to help me because I was too complex of a case. But if I hadn't been so let down by the. By that experience, I wouldn't have found the courage to find different solutions being my OT and the emdr. And that wouldn't have led me to. Led me to my partner or led me to my rewarding job or given me a chance to have a relationship with my family where they're not just caring for me. And that we can actually just be a family again. [00:40:18] Speaker A: Makes me very happy to hear that you have done an incredible job of transforming such a dire, shitty situation. And the way you've been able to shift your perspective and use it to your advantage and to help others is really, really inspiring. [00:40:39] Speaker B: Wow. What a conversation. I'm really grateful for it. Thank you. Sisuela. We're gonna ask the final question that we ask every guest. Can you tell us about an act of care, either big or small, that's really stayed with you? [00:40:55] Speaker C: As we've been talking today, I've had a sensory toy in my hand to prevent me from fidgeting and also just to keep me on track. And I remember the first time someone gave one of them to me, and I was feeling very overwhelmed, and I was like, oh, I need to go. And they were like, why don't you go in the hammock? Because I had a hammock there. And they were like, and you can take this little ducky. It was a rubber ducky that you could play with. And they said, and just kind of swing in there for a bit and just feel your feelings. And that one day spurred my obsession with understanding senses, sensory modulation, toys, grounding. That was a huge act of care that they just did to them. It was a casual thing, but for Me. It changed my life. [00:41:50] Speaker A: That's so beautiful. And I will attest that you are like a sensory queen. You have more sensory toys than anyone. [00:41:57] Speaker C: I know, and I love them all. [00:41:58] Speaker A: Because they're so individual and some of them are hilarious. So cute. [00:42:04] Speaker B: That really is the language of our body, isn't it? [00:42:06] Speaker C: Yes. And you know what? Every time people see me playing with them, they're like, what? What are you doing? And I share it. And they're like, oh, my God, this is so cool. And I just always think about the fact that we could all use with some sensory toys. You can see you've got it out of me now. The passion is coming out my sensory modulation toys. But, yeah, they. They really help with life. [00:42:30] Speaker B: Sisvella, it's been such an amazing time to spend with you today. Just thank you so much. You've got a gift with words, and your words I can feel in my body. And your story is inspiring. And anybody that's experiencing or supporting someone going through something similar would learn a great deal from your experience. So thank you so much. [00:42:57] Speaker C: Thank you so much for having me and for giving me the space to talk about these things. A lot of places want us to speak, but in a very tailored way. And I really appreciate the freedom and the empathy that's come across today. So thank you both. [00:43:14] Speaker A: Thank you. [00:43:22] Speaker B: Lucy. I think I say this about every guest, but Cisuella is extraordinary, and I loved every minute of our conversation with her. [00:43:30] Speaker A: So did I. They're such a brilliant storyteller as well. One thing that we didn't speak about today that Cisuella wanted me to talk about, we didn't mention that Cisuella weaned herself off the medication and wanted us to highlight that that was quite dangerous, but it didn't sound like she had another option. [00:43:49] Speaker B: I mean, I think we also heard from Bec that she had to do that herself back in a few episodes ago. [00:43:54] Speaker A: And I. [00:43:56] Speaker B: And I just really question psychiatry around the need to provide better care for people coming off psychiatric drugs. Deprescribing and coming off drugs is, as Cisuella said, dangerous and difficult, and people need to be supported. I want to sort of acknowledge that I actually found some of her story very upsetting, particularly the story around the ECT and the, I think, unaccountability. [00:44:26] Speaker A: Yeah. [00:44:26] Speaker B: You know, that there was no accountability for what happened to her, and I found that upsetting. But I found myself thinking a lot about having your history taken from you. Like, having your memories taken is effectively losing your history. [00:44:42] Speaker A: Yeah. [00:44:42] Speaker B: And, you know I We all make sense of ourselves all the time, through our history, through our relationships, through our stories. And it's very upsetting that someone's history was taken from them the way that Ciswellers was. Maybe in future episodes we can think together, Lucy, about talking to some people that might help us understand some of the things that came up in some of the stories we've heard. [00:45:08] Speaker A: Yes. Stay tuned. [00:45:09] Speaker B: Stay tuned. Discovery College acknowledges that the views shared in this podcast reflect personal experiences and are not a substitute for professional mental health advice. They do not represent the views of Alfred Health. [00:45:36] Speaker A: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about Discovery College, please head to our website, Discovery College.