Transcript of Are you performing your worth? Trauma, Treatment-Resistant Depression & ECT with Simone Bowyer

Welcome to Notes from the Edge, where we have the conversations we should have been having all along. We talk about the things that we're not talking about. I'm your host, Lisa Lacey, writer, trauma educator, executive advisor, and author of the upcoming memoir Notes from a Certified Madwoman. Welcome to the Edge. Hey, hey, my friends! Welcome back to another episode of Notes from the Edge. I am your host, Lisa Lacey, and this is the place we have the conversations we should have been having the whole time. Guess what? You ain't talking about it, so today we're gonna. And today we have special guest Simone Bauer, and she is a writer, advocate, operations manager, and founder of Light Within Collective, whose work centers around what she calls the language of survival. Today we're talking about what happens when the traits that we call personality— perfectionism, people pleasing, achievement, anxiety, even I'm fine— may actually be roles we learned to perform in order to survive. After childhood trauma, addiction, eating disorders, anxiety, OCD, panic disorder, complex PTSD, and chronic illness, as well as years of treatment for treatment-resistant depression, she reached a point where she believed she had exhausted every option available to her.

After years of that roller coaster— medications, therapies, treatment programs, and hospital admissions— she ultimately underwent electroconvulsive therapy, or ECT, and began asking a better question. And we are all about the better questions in this place. So she stopped asking, what's wrong with me? And asked, what did these parts of me learn in order to survive? So today she writes and speaks about trauma, grief, recovery, leadership, psychological safety, and what it means to move from just enduring your life to really living it. Her work includes Chasing Light: The Light Within Collective, where she creates resources and conversations designed to help people feel less alone, which is the whole point of this show. Simone, welcome in to Notes from the Edge. How are you today, my friend?

I'm very well, thank you. Thanks for having me.

Yeah, I'm excited about this, uh, conversation because I do think there's a lot of people, especially now with the loneliness epidemic that we're seeing, uh, struggling alone. Or at least feeling like they're the only one. So you use the phrase the language of survival. So let's just open up with that. It's Notes from the Edge, so we dig right in. What does the language of survival mean to you, and what do you mean by that these things become our personality?

So, um, language of survival is just, you know, a term that I sort of came up with as I've been exploring different elements of my work. And I think so often our language is based on pathology or judgment. So I'm not enough, what's wrong with me, I'm too much, I'm not enough, etc. And I think the language of survival really looks— my my interpretation of the language of survival really looks at the way in which my body has had to adapt in order to survive. And in a way, my nervous system is speaking its own language as a result of the adaptations I've had to make. So examples as to how that could manifest in my daily life, it may be, for perfectionism, hypervigilance, being controlling, being hyper-independent. And so those characteristics that I have today, in my own experience, formed when I was much younger. as a way to keep me safe in the world. So I experienced a lot of abuse on a daily basis growing up, and my body needed to adapt. You know, I needed to find ways to make myself safe. And so I would— I learned if I could be a perfectionist, if I could be the perfect child, then maybe I would be loved.

lovable. If I was incredibly accommodating, never stepping on anyone's toes, then I won't get shouted at. I almost didn't want to be seen because when you're seen, that's when— that's the danger. If somebody sees me, then I'm in line for danger. But if I can keep myself hidden and just sort of you know, tiptoe around everything, around everyone. That's how I'm going to keep myself safe. So I think becoming, you know, very timid, even— so I learned from a young age, and I now know these were coping mechanisms that I learned when I was younger in order to keep me safe, and they served a purpose. However, as I grew up and became an adult, they became maladaptive. And even though I was safe, technically, you know, safe compared to where I was growing up, and the trauma was no longer present, my nervous system hadn't clicked yet. It hadn't registered, you're safe. You're not— you don't need to be responding in this way anymore. It's okay. We can learn new patterns. So for me, reading, as soon as someone walks into the room, read the body language, listen to the tone of voice, listen to the volume in the voice.

Major, major warning, alarm bells can go off for me with that. The way someone closes the door, you know, if it's too loud, my body automatically interprets that as anger. If I, if I can be successful, then maybe I'll be worthwhile. Maybe I'll be lovable. If I can, you know, it's an all— it's if I can be attractive enough, thin enough, you know, with the eating disorders and that, the food became a huge part. So what I look like, how do I perform, do I do well at school, do I do well at university. I remember growing up when I, you know, that was many years ago when I was at school and we used to do spelling tests and it was normally out of 10. So 10 spelling words that you had to spell and then a mark for each. And if I got 9 out of 10, the anger that it would unleash from my father towards me, because that was unacceptable. Nothing less than 10 out of 10 or 100% was acceptable. So I learned very— and I equated that with love. Um, so if I'm not perfect enough, if I'm not at 100% all the time, that means I'm not lovable, I'm not worth it.

That's a lot of pressure to perform under, constant. Well, when did you— when in adult life did you realize, whoa, I'm still operating in my life like I'm that 8, 9, 10-year-old little girl in the, in the spelling contest. When did that epiphany kind of hit you that these were, to use your words, maladaptive now in adulthood?

Yes. Um, so it took me a very, very long time, if I'm honest. Um, so as an adult, I also found myself, and I think many can relate to this. I found myself getting into relationships that mimicked the relationships I had grown up with. So getting myself into abusive, toxic, unhealthy relationships. Once again, my whole thing, my thinking behind it was, if I can get this person to love me, then I must be lovable. So I would almost pick the most unlikely person to accept me as I am. And it was my goal to, you know, if I can get them to love me, then really I must be lovable. Anyhow, so that carried on throughout my 20s. And then I was incredibly fortunate that 9 years ago now, my mom and stepdad were able to once again send me to a hospital admission, but long-term, a long-term treatment center. And this was for what started off as my eating disorder being the primary reason and then naturally evolved into dealing with all the other aspects that come with it. And it was— so that was the first time I learned about codependency, that I heard, that I learned about being an adult child of an alcoholic.

That was the first time I started— I was introduced to schema therapy, looking at the way in which I viewed the world, where these beliefs came from. And because I had put down the substances, the eating disorder, the self-harm, all these things I had used to not feel and not have to look at these areas of my life that are so incredibly painful, with all of those coping mechanisms put down, I was forced to confront it. And I remember very distinctly being told that— so literally, I can say to myself, if I feel my body responding in a certain way, let's say it's to do with the loud noises or the way someone speaks, body language, etc. I will literally say to myself, Simone, you're an adult. This person is not your father. It's not the same situation. You're safe. And I think, I think for me, what goes hand in hand with that has really been about embracing my inner child because I neglected her for so long. And in my own experience, through neglecting her, I was also inhibiting my healing. I need to— I needed to accept that part of myself and nurture that part of myself and, and approach it with compassion and love, curiosity.

Um, and I, I believe that the real healing came when I finally took her hand and said, I'm here now. Um, yeah.

There's a lot of power in saying, I've got you now.

Yeah.

There's a lot of power in, in that. So you've described, um, the perfectionist, the people pleaser, the high achiever, uh, the woman looking like, hey, I'm doing everything at 110% while falling apart behind the scenes. So what in your lived experience Do you feel like those roles protect us from in our adult lives? You know, if we come from those chaotic childhood backgrounds, it's obvious what it's protecting us from in childhood, but what do you feel like it's protecting us from in adulthood to continue those behaviors that may have become maladaptive without us having the language for it? And boy oh boy, isn't it a game changer when people give you the words? to describe it, like codependency. I remember the first time I was in inpatient rehab, it's— I had learned the term trauma bond. And my, my initial response was, I'm too smart for that. Like, I thought, surely not. I'm way too smart for that. But what, what are we trying to save ourselves from in adulthood? Explain to some people who may not understand, like, why are you carrying on these behaviors in adulthood, even though you're no longer in that unsafe environment in childhood?

What happens there?

So I think, I mean, there's a physiological side of things that are— that's happening, that's truly happening within you. So one that we have mentioned is your nervous system. And if one has not stopped and taught their nervous system that there is another way, it's going to keep responding in the way in which it's been programmed to. And I think in a way, at least, sorry, from my own experience, holding on to— It's so, it's actually, there's That's such a huge question, actually, when I think about it. Because if I look at the core, at the core as to why I developed the perfectionism, why I became the people pleaser, etc., it was all to be loved. And I guess there's still that part within me, no matter how many years of recovery or healing I may have, that deeply wants to be loved. And that still exists. I'm not going to pretend that it doesn't. It might not rule my every decision anymore, but it's still there.

Thank you for being honest.

It does still—

it hangs around. It's daily practice, my friend.

It is.

I think, I think we will be practicing it until we take our last breath here because we spent so many decades within it. So yeah. My friends, what she's saying is it doesn't just magically disappear because you have new language for it and you are in recovery. It takes hard work, um, good work, worth it work, but daily practice for sure. Well, I want to talk about something that you have lived through, and that is treatment-resistant depression and what you finally found, what modality you finally found helped with that. So for those of us who don't know, or some of our listeners who don't know, how did, how did treatment-resistant depression kind of manifest in, in your life? What were some modalities you tried before? And how did the ECT kind of change and revolutionize things for you?

Um, so just a bit of history. So from, from the age of 4— I'm 37 now— so from the age of 14, is when I received my first diagnosis of clinical depression. So I have been treated with medication and in psychiatric care from the age of 14. And as I got— you know, there's some diagnoses you can't make to a minor, so someone under the age of 18. There's certain diagnoses that can only be given when someone has matured into an adult. So my diagnoses did change throughout the years as I got older. And so the last sort of 8 years is when this treatment-resistant depression was floated out there. Along with complex PTSD, which adds another layer to that. And for me, it was living— not living, existing in a deep, dark hole every single day. The pain was indescribable. You know, I can't describe it. I had absolutely— there's a song by Justin Bieber called Life Is Worth Living, and I remember in my dark days listening to the song on repeat, desperately trying to find even just a fiber of my being that could hook onto that phrase and say, yes, maybe life is worth living.

But I tried with all my might, and there was not a single fiber of my being that could relate to that. And I was incredibly suicidal. I had, for lack of a better word, my death date where if things had not improved by then, I can't go on any longer. And so with the treatment resistance, You know, it's not that it's in— that there's nothing that can work. It's just that one is resistant to many modalities of treatment. So I tried, you know, we played around with medications and different types of therapy and more sort of newer alternative, um, depression. Um, so, you know, ketamine's a thing now for, with, with depression. We tried numerous, um, rounds of, of that. Um, and having second, third opinions. to try and find something. We eventually did ECT. It did not work the first time. It was then decided that I would need a longer course of ECT, so we doubled the duration of the initial course. And that finally gave me— I felt like I had space again. I don't know how to explain it, but space to consider something beyond death. And it's still something that I have to maintain, so I do go for maintenance ECT sessions every few months.

I mean, the treatment was— it was every year I had a new hospital admission. I was in high care. I would have to have my own nurse 24/7. I couldn't function. I couldn't shower. I couldn't brush my teeth. I couldn't eat. Everywhere I looked, I saw everywhere I looked was another way in which I could heal myself. Everything I looked at, my brain automatically— you can do this with it, you can do that, you can do that. And it's debilitating. It's so painful. And it's like this cruel tape. that, like, you just— it just— it, it doesn't, it doesn't, it doesn't stop. And, um, I think, like, ECT is a— it's a serious treatment. I don't want to downplay the intensity of the treatment. And I think— but, but I do think, on the other hand, that, um, perhaps there's not enough understanding as to the depth of where depression can take one and how profoundly unwell it can make you, that yes, it may require a more extreme type of treatment. But it really is— one can be profoundly, profoundly ill and unwell. Um, with it and, and needs sort of, yeah, a more, more extreme sort of treatment approach.

Well, and what I, I love that you said about it is it wasn't a cure-all, right? It had your wording space to consider another alternative than checking out is pretty huge, which again means still requires daily practice. To look around and find the reasons to stay, even with such a, a last alternative modality after trying absolutely everything else. So you now though, now, after 9 years in, in recovery, are working in leadership and organizations, which is so brilliant, and such a way to give back. How are you working in the organizations? And what are you bringing to them with, with how you work with people now?

Yeah, so I think it's still— so it's an area I'm incredibly passionate about, and I'm still exploring and still testing things out. But I have a very strong belief that as organizations, as leaders, we need to move to human-informed or human-centered leadership. And, and reason— so I know for myself growing up, when I first started working, there was very much this mentality of what, what's— what happens at home stays at home. You don't bring it into work. You know, there's a, there's a clean, clean, clean cut. And I guess over the years I've realized that that is not realistic. We've spoken about some behaviors already, such as the perfectionism, the needing to control, etc. Those, those become an inherent part of who you are. And there's no switch that you can just say, well, I'm going to, I'm going to leave that part of myself at home. Like, we bring it into our work, into our daily lives. And I really don't feel it's realistic to expect someone to personal is personal, work is work, and cut off who you are as a human being. We need to start embracing human beings as an entire being, as a whole being, and not just parts of the being.

And so it started, kind of started with that. with that sort of— that's the foundation that I don't think it is possible to break oneself up. And that I think— so I've spoken a lot about the nervous system, and I think that sometimes what organizations today call high performance is actually a nervous system that's never learned that it's safe to stop. And what hap— and I'm not— please don't get me wrong. I'm not saying that leaders must become therapists. That's not at all what I'm saying. I'm more advocating for psychological safety in the workplace, a workplace where it's okay to make mistakes, where it's okay to ask questions, Where leaders become a bit more curious as to the person sitting across from them. You know, the person who responds to a message, to messages immediately, the individual who's constantly overachieving, the perfectionist, as we've mentioned numerous times. Even the leader who's able to, you know, everything needs to be controlled and in certain ways, etc. Those can also once again be going back to the language of survival and patterns that we've learned and had to make and had to adapt to in order to keep ourselves safe.

And that transpires in the workplace, basically. So I think for me, Um, it's about creating a, a workspace, um, that allows for the human to show up, um, as they are and, and yes, create that space where it's safe to, to ask questions. It's safe to make a mistake. It's okay.

And it's safe to have an off day. Yeah, it's safe to have an I'm not okay today day, but, and still get your work done because you're supported in that off day rather than judged or minimized or dismissed or pushed harder to just suck it up and endure. So, um, that makes absolute, total, complete sense. And I love your word human-centered. And you've mentioned a word that I absolutely love 2 times already, and that's the word curiosity. And you mentioned it in relation to yourself, but you've also mentioned it in relation to other people. And I think it's such an undervalued and underused word. Um, because when we are curious, it automatically changes our physiology and it immediately takes us out of a, a judgmental place. And I think we as human beings can feel that in one another. So, um, I, I love that focus on, you know, it's okay to not be perfect. And you noted Friends. We don't leave our wounds at home with us, and we don't check them at the door when we walk into work. We go with ourselves everywhere we are. And if we're not tending to these wounds, they are going to bleed out in all arenas of our lives.

They're going to be showing up somewhere, somehow. So, um, that's a very valuable point too. So talk to me about chasing light. I see the beautiful image behind you. So talk to me about chasing light.

So, um, okay, so it's my first, um, book that I've, that I've written and published. And it, it started off as, well, for me, what I thought was just like an offhand comment. Um, so what is it now? Maybe about 11, 12 years ago. Um, I, I had, um, I spent the better half of a year in hospital for medical and for physical conditions. And I had clots in my lungs and they found a hole in my heart. And then I developed septic arthritis that was turning into septicemia. And I was Quite literally on death's door. You know, my mom being told by the surgeon, if I operate, she has a 50% chance of living or dying, and if I don't operate, she will die. And having to make those decisions. And when I remember I was lying in my hospital bed, obviously having come through all of this but still needing care. And, um, someone said, oh, you should write a book about this stuff. And it was like a flippant comment. And we started joking around about like titles and, um, who could write the foreword and all sorts of things like that.

And then I just never really paid much attention to it. Um, and then slowly I started writing in little snippets. And what I'm also quite lucky about is I have actual, like, journal entries from when I was younger. So they are describing the moments as they're happening, like how I genuinely felt being that terrified child. There's this one, there's this one letter that breaks my heart. It's a tiny little note and it says Dad on the front. I don't have contact with my father anymore, just to— yeah, that is an important part of my story. So it's this little note and it says Dad, and then the note says, Dad, I still love you even when you get angry with me. Now, for a little 5, 6-year-old, to be thinking like that already is just truly heartbreaking, and feeling like they need to say that. So, point being, sorry, I have all of these things that I've collected over the years and never thrown out that sort of helped with my writing. And then I would say about 3 years ago, I started putting more sort of effort into the writing. But it was only probably the past 2 years where I feel like I've been well enough to be able to commit to a project as big as sort of writing a book and getting it published.

But I mean, so it's my story, but just to emphasize, or just to mention, it actually ends 8 years ago, the book. It doesn't cover the past 8 years of my life. And the reason being is even when I published this book, The pain I was living in and the absolute darkness and despair and depression, I could not fathom having to retell that. The thought of having to go back and put those past 8 years into words was beyond me. And just something I felt that would never ever happen. And I'll never forget, it was earlier this year, and I just started writing again. And I took a step back, and I was like, hang on, you've just started writing about the past 8 years. You found yourself in a space where you could go back and you can write. Which was, that for me was such a healing moment. And look how far I have actually come that I'm able to do that. And my goal with Chasing Light, so the title is, I spent my whole life chasing for something to take away the pain or to make me feel loved or to make me feel good enough.

It just felt like chasing the whole time. And at the end, at the end of it all, it's being able to pause for just a moment long enough to realize that the light was never outside of you. It's been within you all along. And sometimes we just need that moment at some point in our lives where we have an ounce of space once again from our histories and our traumas, etc., where we can allow that light to shine just for a little bit. So And my intention with writing the book is, I said, I just want to be able to help one person. And my— the editor who first— who did the first round of edits on the book told me that, you know, it helped her put some things in perspective for herself and an understanding you know, from when she was younger. And I just thought to myself, before the book has even been published, it's achieved its goal. So it doesn't matter. Anything more from here is just a huge bonus. And I think light is something like, when you're in the depths of that depression and despair, your world loses color.

Like, you can't relate to color. You can't truly see like the vividness of color and the beauty of color. It's gone. It's drained. And so I also speak about the first time I remember seeing a rainbow and stopping and saying like, I can see a rainbow. I can see the colors in a rainbow. Like, that is such a miracle. And I know it sounds simple and silly and like a small thing, but when your life and your world has been devoid of color for so long, being able to see a rainbow is like, it's so miraculous. And I know, like, I was driving on Saturday, and I mean, I live in Cape Town, South Africa, and it was gray and cloudy and raining. And I was in my car and I was driving and I just smiled to myself because in the, in the grayness and the clouds and the rain, there was this faint, faint, faint rainbow. It was incredibly faint, but I just, I just stood there and I said to myself, Simone, you saw it. You actually saw it. Like, it's just incredible.

In the middle of all the gray. Yeah, in the middle of all the gray. It is amazing how, um, brighter colors get, um, when you're looking at things from a different lens.

Yeah, I will say that.

Well, my friend, where can people find the book and where can people find you for organizational support as they need it?

Sure, so the book is available on Amazon, Kindle, those 2 for sure, I know. It's also available directly on my website, which is lightwithincollective.co.za, and people are most welcome to reach out to me either through the website Um, all through LinkedIn. Um, so it's Simone Boyer. Um, but you've already, you've already actually, um, tagged me. Um, so most welcome to reach out directly through LinkedIn. Um, well, alternatively through our website.

And guys, we will put all those links and clickable links for you, one to the book, one to the website, and one to her LinkedIn page. So you don't even have to write it down. It will be in the notes for you. So my friend, before we let all of our guests go, we always close out with 2 questions. Are you ready for the first one?

Yes.

Okay. What in your own life did you perform the most in order to survive? And what did dropping that role, mask, or performance do for your life?

So my answer is my worth. And it's— and I know this is a topic that you discuss. And I was reading, I was just reading the epilogue in my book again before our conversation today. And there's just one line I want to read. And it just felt so aligned because it literally says, for so long I thought I had to earn worth, to achieve it, perform it, perfect it. The lie that love had to be justified, that peace had to be proven. So I felt for so long that I had to perform my worth. And once again, it's one of those things, you know, we've mentioned it already, it's not completely gone from me. You know, I haven't— it's not, it's not this miraculous, okay, now that's completely gone. And, um, and because once again, for me, it's tied to that would— if I can be worthy, if I can perform my worth by doing these by acting in these ways, I will then be lovable, which is the ultimate, and I won't be abandoned. And those are my 2 biggest things, to be loved and to not be abandoned. And honestly, you know, like I said, it's still— it's a lot deeper down, and it's not as prevalent in my day-to-day life, but it's still there.

Yeah, yeah, it is. It's nice To have a different default though, where when our eyes open in the morning, we're thinking differently than we used to. So that's what I think the right kind of modality and sticking to recovery hands us is just a little bit different default, or we feel a little bit lighter. And I love your language where space is created to feel something perhaps differently. All right, last question. What do you feel we need to be having more conversations about that we are not talking about?

I think that there is no timeline on healing. It looks different for everybody, and sometimes healing literally looks like just standing still. Sometimes that is what is needed in that moment or for that period of time in your life, and I think there needs to be a bigger conversation around Yeah, that healing isn't linear. It doesn't look the same for everyone. It doesn't always have to mean literally progressing upwards. It can mean a few steps back sometimes, and that it's okay. It doesn't mean you're doing anything wrong. And to take the judgment, I guess also that word wrong implies judgment. So to remove the judgment as well from that conversation. There is no right or wrong. And that's something I'm— when I, you know, I've developed reflection projects and a few other things, and I'm very, very, very particular about the words that I do and don't use, because I think without realizing it, one word can even if it's in a roundabout way, it can imply that there is right or wrong, that there is judgment. And I think we need to be so careful, and the way in which we speak to ourselves as well, and change that language, that performative language that we're using.

But sorry, to answer your question, I think around healing, and that there is no timeline set way Um, right way that it needs to be done.

I love that. And my friends, notice she said that standing still is part of the healing for some of us, because for some of us that can be the scariest thing in the world, because that's when you really start to feel. So it doesn't have to be forward momentum all the time.

I love that.

Such a beautiful answer. Well, my friends out there, we're gonna put all of Simone's contact info in our show notes. I'm gonna ask you guys out there the same question: what in your life might you be performing just to get by? And what may setting that role mask or performance down do to lighten your load just a little bit? I am your host, Lisa Lacey, here with our special guest Simone Bauer, author of Chasing Light. And when you find the answer, we will both see you at the edge. Thank you, my friend.