The Double Mind: Living With the Invisible Reality of TBI

A traumatic brain injury isn’t just the moment it happens.
It’s everything that follows.

In this episode of Rupture, Wendy Lurrie speaks with actor and audiobook narrator Suzanne Barbetta about the hidden, often misunderstood reality of TBI.

Suzanne’s injury didn’t look severe.
No loss of consciousness. No visible damage.

But what followed was disorientation, emotional disconnection, memory disruption, and a complete shift in how her brain functioned.

Together, they explore what it means to live with an invisible disability, why recovery isn’t linear, and how a brain injury can fracture both identity and confidence.

This is a conversation about what happens when the thing you rely on most, your mind, becomes unpredictable.

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Transcript

SPEAKER_01 0:00

Welcome back to Rupture, the world's a best guest assistance. I'm Wendy Lurie. And today we'll be talking about TBI and how it can show up so differently from one person to the next. The more I hear, the clearer it becomes. There is no standard version of a TVI, no common script, just different sets of patterns, experiences, and aftermaths. And the experience we'll be exploring today is vastly different than my own. Not because mine is the benchmark, it isn't, but because it is the rupture that launched this entire project. Susie Barbetta is a New York City-based actor, an audiobook narrator. She's also a neighbor, a friend, and someone who's experienced a TVI. And that's what today's conversation is about: expanding our understanding of TBI. Because a TVI isn't just the moment or the injury or the experience. It's a spectrum, wide, uneven, and often unpredictable, and even more often hard to understand. How a TVI shows up in one person can look completely different from how it shows up in someone else. Susie and I are lived examples of that. And she's got ways of thinking about and talking about her TBI and her experience that really resonated with me. Think two halves of the brain, and I hope it will resonate with you too. So welcome to Rupture, Susie.

SPEAKER_00 1:27

Thank you. Thank you.

SPEAKER_01 1:29

Very good to have you here. So let's get started. Okay. Um, like I said, the injury is one moment, and usually the real story starts right after that. But why don't you give us the brief version of how your TBI happened?

SPEAKER_00 1:41

Sure. So I was walking down West 40th Street in Manhattan on my way to get a formal dress for an award show, and there was scaffolding above me, and something hit me in the back of my head behind my ear. And as I was going down, I was thinking, somebody just hit me in the head with a lead pipe. And that's kind of what it felt like. And there was some guy in front of me who looked like he was waiting to see if I blacked out, and I didn't. And because the scaffolding was there, I was able to hold on. So I didn't black out and I didn't hit the ground. My head didn't hit the ground. And then a bunch of women came along and they helped get me off the ground and they brought me into the restaurant that was there, and they gave me ice, and everything that followed from there was just crazy.

SPEAKER_01 2:34

We're going to talk about that in a second, but it's amazing how everything can change in the blink of an eye, right? You're just on your way to do something normal and then it becomes watershed.

SPEAKER_00 2:41

Yes. And there I think there were the the hard part about it for me was as I was like sliding down the pole, the column, and I'm looking at this man, and I'm like tears are coming out of my eyes because I was hit so hard. And he was just watching me and he didn't offer help to help and he didn't do anything. And I was like, there was this weird feeling of unreality about it. And trying to put that together with everything else that happened after, like it just stayed with me for a really long time.

SPEAKER_01 3:13

I think these incidents will stay with us forever. I will never forget the hatchback coming down on mine, the skipping rocks on my head of the hatchback. It's like that stays with you forever. Right. Okay, so let's talk about the immediate aftermath, right? What was your the first phase after the injury like for you? Like what symptoms were you experiencing? What were you going through?

SPEAKER_00 3:35

Well, the interesting thing was that I didn't have everybody kept asking me if I had headaches. And I didn't have headaches. And because I never blacked out and I didn't have headaches, I was like, you know, whatever. Let's just I got I've got stuff to do, you know? You can say shit to do. So in terms of when I was at the when I got the CAT scan done, the guy that was there, the text said to me, Listen, one of your pupils is more dilated than the other, but we're not seeing any kind of bleed or any kind of break or anything on the CAT scan. So you don't want to just go get that checked out with your eye doctor. And honestly, I completely forgot about that until like way later. And so the weird for me, the worst part about it was I would have this horrible earringing and I would get this weird sense of disconnection. Like I was seeing what was front in front of me, but I wasn't feeling anything. And I I it was like everything had a delayed response. So if somebody said something to me, there was always this like pause. Like I as if I need extra time to register and figure out how to respond back, which normally you just respond back, you don't think about it. So because I'm somebody who doesn't really have a poker face, I've got a very, you know, all my emotions are on my face. You're expressive. I think that was really odd for the people around me in my support job, who were the people that I basically saw every day. And so there was that, and the whenever I started to have an episode, the the warning was the ear-ringing, and when the dissociation, and it was like I was floating away, like there was a string, and I was on the other end of it. And so everything around me, it was kind of like I was moving through molasses, which again is weird for me because everything about me, I talk fast, I move fast, I got little, you know, little legs and little steps. Everything was in this weird, slow, disconnected thing. It was very sharing.

SPEAKER_01 5:48

So you said before you sort of have you mentioned like an episode, and before that, you there were a couple of tells. What is the episode itself that you're referring to?

SPEAKER_00 5:56

So the episode was I would be fine, and then suddenly I would realize that not that I didn't know where I was, but I wasn't connected to where I was. It's like I wasn't I was it's like I was somehow untethered to wherever I was and whatever was happening around me. And it was this weird, almost uh blunted emotionally. And the only thing I can compare it to was the time I was undergoing a period of intense stress because my husband was ill and he was in the process of dying, and my doctor tried to put me on Lexicro. And this had that same weird, blunted, disconnected feel about it, as if my emotions were not real.

SPEAKER_01 6:53

Did you have did anyone explain to you at the time what was happening to you neurologically that would explain these symptoms, which had to have been very alarming because they are so different than the way you are normally?

SPEAKER_00 7:04

Wow. And as the thing is that this happened like on a Friday night, and I stayed the weekend at a part of the weekend at a friend's apartment so that I wasn't alone overnight. Everybody stressed that was really important. And the only warning I got was about, you know, not spending time on screens and if I started to have headaches or if I got nauseous. Nobody at that point said anything to me about weird brain fogginess or emotional stuff. And I didn't make my way to the doctor until the following Wednesday. And by that point, things had changed. So there was this weird disconnectedness, but I couldn't stay awake. Like when you have a really bad flu, and no matter what you do, you can't keep your eyes open. My doctor was in Midtown East, and I was on the train, and I couldn't stay awake on the train. That is like a 20-minute ride. Even when I got into the waiting room, again, it was like a 20-minute ride. My primary doctor did stress to me that the symptoms could be all over the place, but she didn't say anything about emotional symptoms. But the thing is that there was a guy in the office, an a young attorney, and he grabbed me. This was after I returned to work, which was a few weeks later. I was out of work for a few weeks, and he said to me, Listen, I played ball in college, I've had a TBI, and he said, Nobody talks to you about what happens emotionally, psychologically. And he said, if you need anybody to talk to, please come and talk to me. And I was so startled by this because this was the first that anybody had mentioned anything. So I was kind of in this emotional wasteland where everything, all the different tasks and things that I had to try to do, whether it was for my support job, which was screen heavy with monitors and tracking stuff and going back and forth on many different details. And my other work, which was my audiobook work, which requires me to sit in the booth, read a script, and you know, use engineering software, listen for mistakes, all of those like that was way beyond me. And my okay, confession here. I have never been a patient person. It's just not one of the virtues I have ever had, like, not ever. Understood. But even for me, the lack of patience, and I what would happen was I would be on the verge of tears over something that I shouldn't have been on the verge of tears about. Because before, whenever things happened, I was always able to figure out a way and fight my way out of it, like power three stuff, just power through and keep going. This was not gonna allow me to do that. And I will say the one thing that my primary care doctor was very clear about. When I showed up in her office, I'm like, you don't understand. I need shit to do. Like, I can't, you know. And she's like, Well, you can't be on your phone. I'm like, I can't be on my phone. I manage two departments. Like, I'm on my screen all the time. And she's like, Oh no, I have to write you a note. Like, this can't happen. You're gonna need several weeks. She's like, You want to listen to music, you want to listen to audiobooks. She's like, your brain needs time to heal. And she's like, I understand with your history that you're used to just deciding you're gonna get through something. That's not how any of this works. I am so sorry to tell you. And I kind of sat there for a moment, stunned, because I had no framework for that.

SPEAKER_01 11:10

None. Let's go back a second, because just a moment, because I want to get to the you went to the you went to see the doctor. It was about about a week after it happened.

SPEAKER_00 11:18

It was about four or five days.

SPEAKER_01 11:19

Four or five days. You went to because we've those of us with TBIs have tended to follow different paths when it comes to which doctors we see, which specialists. I mean, I started with a headache neurologist, which actually eventually led me to a concussion neurologist who was also a neuro ophthalmologist. So I buried burrowed very deep into the subspecialties.

SPEAKER_00 11:39

Uh-huh.

SPEAKER_01 11:40

But some people don't go that way. You started with primary care. Did you stay with primary care? Did you see a neurologist? Like who were the doctors?

SPEAKER_00 11:47

I did eventually see a neurologist, but she said to me at the my appointment with her, she said, listen, here's the problem. She's like, the CAT scan doesn't really show us what's happening in your brain. Every brain is different. So much of it depends on what part of your brain was hit, not just how hard it was hit. And she said, there's not a roadmap. So she's like, if you want, and she's like, we can do it now, or if you want to, if you feel like you're not getting better and you want to go see a neurologist, we can set up an appointment for that. But she didn't make any kind of delineation about a headache neurologist or a concussion neurologist. I have no idea what kind of neurologist I saw. It was just somebody in my network that she, you know, she gave me a couple of referrals. And when I did eventually go, he was a very nice man, but he essentially told me what she told me, which is that there is no way to predict how long it's going to take for you to get better or what the path is going to be.

SPEAKER_01 12:48

But and that's that's all true. But did the neurologist recommend any treatments, any therapy, any rehab?

SPEAKER_00 12:56

No. No, nothing.

SPEAKER_01 12:58

Nothing.

SPEAKER_00 12:59

And the thing is, you know, I told him about the different things, you know, because the the audiobook side of my brain required, you know, all kinds of creativity, even though I had to operate software and stuff, while the very analytical problem solving part dealt with the stuff at the law firm that I worked at. And so I had these two different parts of my brain that were engaged all the time, and nobody could tell me how long it was gonna take to get better, which parts might come back first. And he just kept saying, you know, it really depends. Every person that walks into this office that has a TBI, their symptoms are different, they're it's all different. And I, you know, I was so perplexed by all of it that I decided in Susie World, I'm just gonna do what I always do. I'm gonna put my head down and I'm gonna try and do as much as I can do. And like I was gonna kind of build my own metrics, like how long does it take me to do this? How long does it take me to do that? And so I was noting where the differences happened. And the emotional part in in the immediate thing, like in the immediate few weeks, didn't matter because I was basically home in my apartment, and I was very lucky because my support job, they were amazing. They had seen me through other horrible issues, and they I was a valued employee and they treated me really well. And so when my boss said to me, Well, why don't you try to see if you can come in? I think it was like a three three-week mark, and she's like, and she's like, Here's here's the deal. She's like, You come in, you do what you can do. If you start feeling really funky, you leave. So that's what I did with that part. I went into the office, and what I was not prepared for, because you know, I don't really have fluorescent lights at home, was how horrible the fluorescent lights were for my brain. And I would know because I'd be sitting at my computer, and all of a sudden my ears, the ringing was so bad. And again, no headaches. But I I think the first week, I didn't last any more than two hours. And when I got home, I was exhausted. I just slept and slept and slept. And so I wasn't able to accomplish much, and that was really scary and embarrassing. And I felt, yeah, it I mean, there was this weird shame attached to it. I remember when I was trying to do one of the things I I dealt with the library and I dealt with offsite in addition to managing these two departments. I had to barcode, let's say a dozen boxes, send them to off-site. So you put it in a spreadsheet, you mark out the barcode numbers, you have a description of barcodes, and eventually that makes its way into a database, which I also did. Wendy, this took me almost 45 minutes to an hour.

SPEAKER_01 16:19

What would it have taken you before?

SPEAKER_00 16:20

Oh my God, maybe 10, 15 minutes, right? Because the barcodes were all sequential. I already had the descriptions, but it was the back and forth and the physically going back and forth, and I had to check and recheck, and I still made errors, and I ended up in my boss's office in tears. And I said, I I was so frightened, really, and ashamed of it. And she said to me, Stop, breathe. Because you know, this was not this was not how I showed up in my office, right? The whole time that my husband was sick and dying, like I really didn't fall apart until the very, very end, right before he went out on hospice. So this was a kind of a weird thing for me to lose my shit about, but I did. And the thing is, because I had powered through everything, there was this fear. My God, what if I can't make this better? What if I can't do my job? I'm it I'm my only income. Like, how am I gonna pay my mortgage and how am I gonna do this? And how am I still gonna do my audiobook work?

SPEAKER_01 17:33

And so fear. Fear, guilt, guilt, shame. Yes. That is a a witch's brew. It's like a toxic cocktail.

SPEAKER_00 17:43

Yeah. Exactly.

SPEAKER_01 17:44

Yeah. Yeah. How long did that last? I mean, and how long did you keep working at the law firm?

SPEAKER_00 17:49

Well, I I didn't quit the law firm until 2022. But that period of slow incremental, I I can't even for somebody who lacks patience, the incremental improvement was just awful. It took me six to eight months before I felt like I got back to kind of where I should have been, where I could do things. Certain things still uh would occasionally bring me out into that weird disconnected thing, but it didn't happen as frequently. The audio book dirt work was different because, again, thankfully, the author I was working for, very lovely Australian woman, when I told her that that book was delayed for a couple of months while I tried to painstakingly work through it. The hardest part for me was when you make characters, say in a fiction book, you create a voice reference file with who has an accent, who speaks this way or that way, or whatever, speech patterns, pacing, and everything. And I usually, once I created the characters, very rarely, unless it was somebody that showed up in chapter two and then not again until chapter 25, I wouldn't normally have to go back and check those reference files. I had to check the reference files all the time. And I remember at that time I was in a Facebook narrator's group and I said, I was tr I was freaking out about it, and I said to somebody, you don't understand, I have to keep going back. And they're like, Well, I always have to go back. And I was like, but I didn't.

SPEAKER_01 19:25

I didn't. Right. Exactly.

SPEAKER_00 19:27

Exactly. And so it affected to me the other scary thing was so it affected both parts. It affected the analytical, data-driven, problem-solving part, and it affected the the creative part in that my retention, my memory retention for those characters was just not there. And, you know, for a while I had to deal with a little bit of a block about it because I got scared again that it was never gonna come back. And that definitely improved, but I never got back to where I was.

SPEAKER_01 20:10

So that was actually my next question. Like, if you had to assign a percentage, what percentage did you get back? And how long did it take?

SPEAKER_00 20:17

Creatively, with the retention, I would say I'm like 70% unless I'm really, really tired, you know, if I'm working, you know. For the analytical part, because there were so many different types of things I did at my job, I found that harder to quantify. But I became much better at asking for help.

SPEAKER_01 20:44

Which was probably not natural.

SPEAKER_00 20:46

No, because okay, as a paralegal manager and the litigation support manager, I was the one that was checking everybody else's issues. I was the one that, you know, somehow stepped back and saw the pattern and fixed the problem. I now had to say to somebody else, I mean, look, you you especially if you're if you look at something three times, you stop seeing your so your own errors. That was normal to say, okay, I can't look at this anymore. Can you look at this for me because I I can't see my own errors anymore? But this is different. I lacked confidence for a long time. And it was very humbling to have to ask for help in that way. And I had a really gracious coworker who was just lovely, and boy, did that help. Boy, did that help?

unknown 21:38

Yeah. Yeah.

SPEAKER_00 21:39

And not everybody not everybody gets that, right? So it's not like poor me. I mean, I was lucky because most people were extremely supportive, even if people didn't understand. The other thing that we haven't really touched on is that my whole thing. Thing about this when you're a power-through type person, you minimize what happens to you, no matter how bad it is. Just and for me, my gallows humor got me through just about. We are gonna get to that. I have a gallows humor coming up. I do. And so, you know, part of the reason why I minimized it from the beginning was my younger sister was in a terrible accident swimming when she was in college. And she had a TBI that was so bad that she literally lost two weeks out of her life. Poof. And she did suffer terrible headaches, blacked out, had no idea where she was. I mean, terrible. And she was never quite the same after that. So for me, I'm like, you know, it's like dealing. I had to meet as bad as hers. It was like a paper cut, right? Like I had a paper cut. And so when I when I was trying to figure it out, when I was trying to figure it out myself, I'm like, okay, so I'm not moderate or severe, I'm minor. And so everything should be minor. And all of that came back to minimize, minimize, minimize, minimize. It does. And the problem with that is every time you do that, then when you encounter a problem, the tears and the fear and the shame and the guilt, like, why is it taking me so long? What's what's wrong with until I used I finally at one point I started saying to people, well, my brain kind of broke, so I but it took me a long time to get there because humor has and sarcasm has gotten me out of just about every situation I ever encountered. The humor for the longest time was just missing. And I again, I didn't have a framework for that.

SPEAKER_01 23:44

Right. Nobody does. No one has a framework ready for when they have a TVI. And by the way, I totally, totally relate to the minimizing because I've always also been a warrior, power through, push-through, da da da. And the day after mine, when I got on my Zoom call at my two and a half week old new job with my entire team who were all men, and sold cuts on my head, and I was wearing dark glasses. And they all said, What happened? I'm like, I'm fine, I'm fine, I'm fine. And then they I finally told them what happened, and they all said, We're guys, we understand concussions because we play sports. It's not fine. You need to do something. But still, it took me three days to get in touch with a neurologist to tell me to go get a CT scan. So totally understand the minimizing, even though my headache did start the next day and it's I still have it three and a half years later. So we'll celebrate the anniversary. So I understand the minimizing. But the other thing that you said that really, really resonates is the confidence. Because I found like one of the earliest casualties for me of the TBI was my confidence. Because the thing I was always able to count on, right? My brain, my brain's ability to solve problems was suddenly the problem itself.

SPEAKER_00 24:49

Yeah.

SPEAKER_01 24:50

And that was scary. That was really, really because who are you without the thing that gives you the confidence?

SPEAKER_00 24:55

Yeah.

SPEAKER_01 24:55

I mean, you had your own version of that. Sure. Sure. Talk more about the two sides of the brain thing, because I think it's super interesting.

SPEAKER_00 25:02

So as an audiobook narrator, it used to be that you would go into a studio and there would be an engineer and a director, and you could just be the actor, and you just, you know, went through and read through the book. And that is still the optimum because you only have to, you're just working creatively. You don't even have to listen for your own mistakes because there are two other people that are listening for you, right? That will catch it. As your own engineer and the way things are now, a lot of people self-record. And one thing I discovered was, you know, self-recording, especially if you tend to be impatient and a perfectionist, is like, oh my God, this is like take 324 of this, you know, accent, whatever. You had to engage all those parts of your brain at the same time. You weren't just the actor. You had to operate the software while you're listening for this, the mistakes, while you're making sure that you're coordinated, oh yeah, now there's this other character coming back in again. And, you know, maybe you have characters with multiple accents or multiple versions of different southern accents in the same scene. It's a lot. Like it's just a lot. And so there was always that part of my brain. And I knew always that if I went into a studio, I could just lay down, you know, just go through it. It's so much easier when you only have to be the creative person. It's much harder because you're also self-censoring and looking for your own mistakes. So that engages the two parts of your brain. And and I still struggle when I self-record. I'm not as crazy as I was at the beginning, but you still have to listen for all those things. It's hard to be really immersed in the story when you're also doing those other things, right? The other part of my brain, which also fed me, is the kind of active problem solving. Like I wasn't a kid. I'd never been math-centered. I was somebody that hated math problems. I couldn't understand what they were asking me. I was thinking about the train crash and all the people dead, not who was going how fast and whatever. Like that's where I got caught up in. And I was not math-brained at all. I was language and communication and emotion and humor, all of those things. Which, when you're dealing with a bunch of geeky people who are trying to problem solve, like I was a liaison that could speak tech in a layman's way to the attorneys, who most of whom were tech challenged, even though they were extremely bright and well-educated, the tech tech people that only talked their language, that didn't understand how to be, they didn't know how to people, right? So even in my very analytical job, I also had to have the creativity to be able to go back and forth and communicate those things. And when my brain was not functioning the way it should function, oh my God, everything became so much harder. And things that weren't normally triggers for me. Like I was always the kind of a kid, even when I was young, if I didn't get something immediately, oh, I'm stupid, and I'd get a patient and I'd throw the paper and the pencils across the room, made my mother crazy, right? Always very hard on myself. So as an adult, okay, maybe I don't throw the paper anymore, but all of that self-critical stuff is still there. So I took a big hit to both sides. Like I didn't really understand that I was analytical and problem solvy until I talked to my older sister, who is all math-brained. Like she was a business analyst for, you know, MetLife and then UPS, and she worked in logistics and she was like a computer whiz. I wasn't that. But when I recognized when I talked to her about the kind of things she did, I was like, wow, so I'm not dumb that way. Like that's a skill, that's a skill I had that, you know, being able to problem solve and do those things and put them together. I didn't know how to operate in a world where both sides were challenged. And I didn't know how to talk about it to other people who hadn't been through it. I never hung out with sports people. That wasn't my thing. I was the the the the drama geek and the gleam and you know whatever. So the only person that I knew that had a TBI was my younger sister. And I mean I could try to talk to her about that, but hers was so much more severe. That it seemed kind of nuts to do that because what she had to deal with was so much worse. And I I couldn't find a way to a way into the discussion. You know what I mean?

SPEAKER_01 30:15

I do. Well, also, I find with most people I talk to about TBIs, most people I come across, one of the things that's most difficult about this particular condition is its unrelatability. If you haven't had it, you cannot understand it. And you can't even explain it. It's like, and and one of the sort of analogies I've used with with people is I went through breast, I was diagnosed with breast cancer in 2018, and I'm fine and it's long over. However, everyone knew how to relate to that. Not just how to relate to it, but they knew exactly the questions. They asked me what the staging was, what the phasing was, what the tumor size was, how many weeks of radiation. I mean, they, you know, it was I an immunotherapy or chemotherapy. Everyone knew enough about it to have questions because everyone knew someone had who had gone through it. This wasn't like that. And in the early, like first year of this, I had no one to talk to who could even begin to understand that. And even, you know, la later, there were only people I knew on Reddit. I mean, honestly, through this podcast, I've met many more people who I can talk to about it, which has made it better. But I think one of the things that makes this condition uniquely difficult is its unrelatability. And the fact that, like you're right. I mean, if it's if it's if it's very severe, it may not seem relatable to you, but the thing that people don't understand, people, especially who don't have this, is that even a minor concussion, a minor TBI can cause lifelong symptoms.

SPEAKER_00 31:32

Yeah.

SPEAKER_01 31:33

Like it doesn't have to be severe to be the thing that breaks your life in half.

SPEAKER_00 31:37

Sure. And here's the thing. I understood intellectually that that would have been important because when I was a caregiver and then when I was then a widow widowed, I had support groups. Like I belonged to Build Guild's Club. I had group support because nobody in my peer group was dealing with what I was dealing with because I was like 45 at the time. And so that was like way too young, unless you had family in the military or something. It was kind of unusual. Those people and those organizations kind of saved my life at that time because I had I could sit in a room with a bunch of people that I had nothing else in common with with, but we all knew how to do that talk. Everybody in the room got it. With the audiobook work, because the nature of the work is more isolated because you're frequently working alone unless somebody is remoting in and it's a directed session, you're not normally working with other people. It's not like being in a theater, you know, in a show on stage where you're working with a group of people. So there was an isolation about that. I also, the other thing about this is other people's timelines when there's an event, it ain't ever your timeline.

SPEAKER_01 32:58

That is true. That is true.

SPEAKER_00 33:00

So like there's this expectation, well, that's all done now. Like we can, you know, after like a month, most people were like, oh, that was a terrible thing that happened. But you're better now. Yes. And the thing is, when you have a TBI, like you're walking around, it's not like you've got a bum leg or, you know, your arm's in a sling. There's nothing to indicate that you're still having an issue.

SPEAKER_01 33:25

Well, it's an invisible disability. We talk about that a lot as another thing that makes this really challenging. Yeah. Is that you can look fine and sound fine and not be fine, but no one knows that. And they also expect you, and this isn't a slam against people. This is the we we live in a society that expects rapid recovery, healing on schedule. And when you don't, you're made to feel like the failure. Sure. Right?

SPEAKER_00 33:46

Yeah.

SPEAKER_01 33:47

I want to switch gears a little bit. So, you know, we the podcast is called Rupture. We talk about rupture as the event that breaks your life into before and after. Clearly, had yours was a rupture the same way mine was a rupture. But one of the things we talk about next after we sort of interrogate the rupture is how rupture reveals systems failures, right? How rupture shows you that systems that you thought you could count on, because you had no reason not to think so, may not be there for you. And the systems come in all different shapes and sizes. I mean, for me, the easiest one to use is the disability process, which I went through two years, two and a half years after I had the TBI. My neurologist said, What took you so long? And I applied for disability because I could not do the jobs I used to be able to do. I just, I couldn't do really any job anymore. And I found that the process was, it was designed to exclude you. It was designed to make it more and more difficult with hurdles that got bigger and bigger and more and more inflamed. And to do that to someone at the moment of their maximum vulnerability felt uniquely cruel and also like a failure of the system, but also that maybe that's exactly how the system was designed, because it wasn't really designed for the people who needed it. So one of the questions I typically ask our guests at this point is what systems failures did you erupture reveal? Like what was it family, workplace, social life, identity? Did any system just not show up in the way you expected it to?

SPEAKER_00 35:08

Well, I think the thing that continually stressed me out was when I had to make changes with with a system that was in place just in daily life tasks. So, like there was something that happened with the mortgage, or no, with the my maintenance and paying it, and of course, it was all online. And I had put in the following year, and I had to call the management office and talk to somebody about it. And the next thing I knew, I was like blubbering like an idiot because I'd never been late before. And I mean, she could see I'd never been late before. And she was, I was so beside myself at that point. She just wanted me to like stop crying, right? Yes. And I was amazed at how many small things like that. It made me think about people who are older who don't have computer skills or who don't have access that way, because the number of times I had to say to people, listen, I had a head injury, so I'm not quite right, and I can't you have to help me figure out a way to do this, which was just awful. So it was systems of daily living? Yes. It was it was like the things that you don't think about. And it's like you wouldn't think that you have to have multiple steps and hoops to jump through, but you do, and some of those things are set up because they w they want authentication and they don't want anybody to hack your account. And I get that, but when you're dealing with this, you can't figure out how to get through those hoops. At work, my support job they were I gradually I increased and increased, but it took a long time before I was back to work, like in the office full time. And they were extremely patient with me. It took weeks, and I think at least where that was concerned, so in terms of my work life, it didn't affect me the same way it affected you. It was more like the the crazy things that the things that happen in regular life that you don't think about. Even now, I had something happen. What Social Security, okay? I'm like, oh God, I finally have to do this online thing or whatever. And you have all these different hoops you have to jump through, even you have this kind of ID and you should be hooked in. And they, oh, now you have to take a cell phone picture, and now you have to take a picture of your license. And so you're running around back and forth, and I kept going through the process, and then I'd get hung up somewhere and I'd have to start all over again. To the point where I stopped and I did it the next, I went to do it the next day. And then somehow, even though I got through all that, I must have missed a step. The notifications are going to my old Gmail address. So somewhere in that maze of all the things with the photo and the, you know, I still missed something. And I was like, you know what? The Gmail's not shut down. Uh when I have the brain power, I will go back and do it. But it's increasingly difficult. Like if you don't have a secondary phone number, I mean, now I use my Google Voice number, it's the only secondary number I have, but some sites won't accept that, which makes things very tricky. And it's all these different things that I'm not saying the systems are set up designed to fail. I think those things are put in place because they're trying to eliminate a particular kind of problem. But for anybody like us that's just trying to navigate, it just makes it exponentially harder.

SPEAKER_01 39:00

Yeah, it does.

SPEAKER_00 39:01

And I have to stop, and sometimes I'm on the verge of tears. But I mean, the number of times I found myself in the immediate af aftermath saying, I'm so sorry, something happened to my brain, something happened to my brain, and I mean I couldn't even talk about it like in an articulate way, which was really weird. It was like I was talking with a fifth-grade vocabulary suddenly. And I think that was reflected by the emotion. Because I'm an emotional person, I think I lucked out because frequently the person on the other end of the line was a woman, and she could hear how stressed out I was and how upset I was. And so I was able to somehow make that work. Not everybody can do that. And you can't do that if you're working with an online system. There's no opportunity for that. Like it just doesn't matter. So with me, it's more like my identity, the person who I thought I was, was so deeply challenged. That's the system.

SPEAKER_01 40:03

That's the system that failed the first is identity.

SPEAKER_00 40:06

It was so deeply challenged because I was like, if I'm having a problem being creative, and I'm also having a problem thinking things through, what the hell am I? Who else? Who am I? I didn't know. I didn't know. And it it was unlike when I had a support group around me, didn't I couldn't figure out a way to find that same thing. Like Reddit never occurred to me. I'd never been on Reddit. And also in terms of people who I was working with, whether it was in the audiobook world world or whatever, the last thing you want to do is tell anybody that you're still having issues. There was one coach that I spoke to, and she's a lovely woman, and I said, you know, I don't know if it's ever gonna be back 100%. And I don't know what to do about that. Now, maybe to the outside world, that doesn't matter because they can't see it. But that it doesn't matter if it matters to them. It matters if it matters to you. Yes, it it's it's my own very harsh, very critical, like I know I had this. And that's hard.

SPEAKER_01 41:25

Yeah, it is. Okay, two more questions. And and then we'll wrap. So the first one is so we have a moment on every one of these episodes where I invite our guests to use what we call the magic whiteboard, right? Which is the whiteboard that comes with an infinite number of dryer ace markers and no restrictions and no barriers, and you can do whatever you want. And all I'm asking people to do with it is if you could fix one aspect of whichever system did not show up for you, or did not show up as much as it as it could have, what would you do? What would you fix?

SPEAKER_00 41:57

The if I could feel secure in that creative retention, like you have to understand, I had a book series, I did like eight books in that series. Some of the books had 70, 75 characters in them. And luckily, the books that I was working with at the time this happened were romances that had very few characters. So I was able to kind of power through them. But if you're working on a fantasy or even a science fiction or a world that's populated by multiple books and then spin-offs, that's a lot of creative retention. And because I've always like my first show was when I was five. They had a Christmas play when I was in kindergarten, right? And somebody was out six, so what was supposed to be a scene I had to turn into a monologue, like he had 103 fever or something. And so so there I was on stage making trying to play both sides of the scene with myself and whatever this Christmas thing was. That has always been so much of my identity that I I think that it was the the hardest, scariest thing for me. That what if I never get that completely back? If I could if I could have, if I could know that I was a hundred percent back, that would be amazing.

SPEAKER_01 43:25

I don't know that the magic whiteboard can deliver that.

SPEAKER_00 43:28

We might need a different tool.

SPEAKER_01 43:33

There might be other tools and artifacts we can use to that. The magic whiteboard may not be perfect, but that's totally fine. That's totally fine. Okay. The last thing, and this is this is sort of a question, but not really a question. But so all of our guests get their own ministries because Best Guestistan is governed by a series of ministries, which actually all work together in a system called the circle. And ministries come in all different shapes and forms. And I have a ministry for you. Okay, and you will get your own publication. Of what this ministry is about and all that. But what I was thinking of is the ministry of the double mind, this idea of a ministry that really thinks about the two halves of the brain, how they work together, what happens when they don't. Yeah. Going to what you did. But really a ministry to explore sort of this interesting duality of the analytical and the creative and how they work together. They're not two separate things. But I'm hoping you would be happy to run this ministry.

SPEAKER_00 44:24

Love to run that ministry.

SPEAKER_01 44:26

Awesome. The paperwork, well, I'll just put it under your door. It'll be confounding. It'll be confusing. It's best guess to stand. It's totally fine. But as long as you accept you are in and you will be officially the minister of the ministry of the double mind. I love that. I love that. Thank you. Well, and on the day that this episode airs, I will publish that ministry.

SPEAKER_00 44:46

Oh, cool.

SPEAKER_01 44:47

Okay, so you get an actual like here's what the ministry is about and here's what it does.

SPEAKER_00 44:50

That's amazing. Thank you so much.

SPEAKER_01 44:53

Thank you. Well, first thank you for accepting. And thank you for coming on and sharing your experience. I think this has been really, really insightful and interesting.

SPEAKER_00 45:00

Oh, you're quite welcome. And I have learned so much from you about this whole thing. And again, you speak my language.

SPEAKER_01 45:10

I never want to become an expert in this, but it's sort of what happens along the way.

SPEAKER_00 45:14

So you have the scepter. You're like the empress, the empress of best guessestan.

SPEAKER_01 45:20

I'm just the acting comm, acting head of comms for Best Guess Stan.

SPEAKER_00 45:24

But thank you, thank you, thank you. Thank you.

SPEAKER_01 45:28

Thank you for joining us for this week's episode of Rupture, the world of Best Guess Estan. Today's episode featured Suzanne Barbetta, and we explored the different ways the TBI shows up in different people. If this episode resonated with you, or you know someone who could benefit from hearing it, please consider sharing it with them so they may find our community. And to support our work, you can like, subscribe, share, or join us at bestguesses.com. Bring us your rupture. Bring us your systems failure. We want to hear your story.