Why My Brain is an A**hole — Part 1: Living With Mental Illness After a Stroke

This is the episode most people wouldn’t have the courage to record. Kristen Toepfer has never been most people.

In this raw and deeply personal episode, Kristen pulls back the curtain on something that doesn’t get talked about enough in the stroke recovery world — the mental health battle that can come after surviving a brain injury. For Kristen, that battle hit hard. Earlier this year she found herself in and out of inpatient psychiatric care, experiencing paranoia, delusions, and hallucinations so vivid she couldn’t tell what was real and what wasn’t. She called the police on herself. She called ambulances. She was that scared.

Kristen opens up about being diagnosed with schizoaffective disorder — a condition that affects only 0.3% of the population — and how the scar tissue from her eight brain surgeries, combined with her longstanding bipolar disorder and a period of painful isolation, created a perfect storm that led to a full nervous breakdown. She explains what schizoaffective disorder actually means, what hallucinations and delusions really feel like from the inside — nothing like the movies — and why the medication that helps her stay stable is something she will never stop taking.

She also talks about bipolar disorder — she was first diagnosed at 14 years old — and what it actually looks like to live with Bipolar 1. Not the dramatic mood-swing version people imagine, but the reality of cycling through months of highs and months of lows, and learning to watch your own routine as an early warning system before things go sideways.

This episode is for every stroke survivor who has felt their mental health unraveling and didn’t know why. It’s for every family member who watched someone they love disappear into paranoia and had no idea what to do. And it’s for anyone who has ever been too ashamed to ask for help.

Kristen asked for help. And she’s here to tell you that you can too.

Subscribe, share, and follow Kristen’s journey at kristentoepfer.com

Join Kristen and cohost Billy Montana for monthly episodes filled with advocacy, education, and inspiring conversations.

Together, let's raise awareness for stroke and aphasia and support each other on the journey to recovery.
http://kristentoepfer.com

Transcript

SPEAKER_00 0:59

Hey everyone, welcome to the Kristen Toper Podcast. She is a stroke and aphasia advocate. And the name of this podcast episode is My Brain Is an Asshole. Welcome, Kristen. How are you doing today?

SPEAKER_01 1:15

Okay.

SPEAKER_00 1:18

You know, we have previously talked about other topics, but recently, since the beginning of this year, you've been going through some stuff, and I wanted to kind of go over a few things. So the first thing is you've been telling me about scar tissue and its effects. So why don't you tell the listeners what the beginning of this year has looked like for you and what you've been through?

SPEAKER_01 1:43

Beginning of this year, I've been in and out of inpatient at the in the mental at the hospital psych ward. And I needed help. And um I told my husband, and he knew I was going through some stuff. So like I said, um, I needed help, so I got help, and it's important that if you're going through some stuff, you need to get help. Um, so I was having delusions, and I was having paranoia, and I was having just a lot of things going on, uh, anxiety, and it was just it was bad. So it was it was it was a lot, and that happens also a lot with stroke survivors. Um, I also have bipolar, so um, I also have a lot of scar tissue from the eight brain surgeries I had, and it all matches up together. So that's when I was diagnosed with schizoaffective disorder.

SPEAKER_00 3:28

So for the people that don't know, what does schizoffective actually mean?

SPEAKER_01 3:36

That's when you go through highs and lows, and then there's more symptoms that are advanced of bipolar disorder. Okay, and there's more symptoms like significant health problems, anxiety, um, aphasia, like communication problems. So, on top of my aphasia, it was um because it's it was more um stressful events, that's what really sent me over, and uh the paranoia and lost the reality really.

SPEAKER_00 4:30

Can you give the viewers that are listening an example of that?

SPEAKER_01 4:35

Um, pretty much um I thought like everybody was about to get me. Um, I was having conversations in my head that really weren't happening, but I really, really believed that things were happening.

SPEAKER_00 4:54

So it's almost like having a dream and believing that the dream was real, kinda.

SPEAKER_01 5:01

Right. But you were awake to uh really more like if you have a visit vis vivid dreams. Yeah, but they were just real, like for me it was real, but I couldn't distinguish the difference between a daydream or like a nightmare or anything. It was to me, it was me, it was real, and then like the the chemical, you also it's more of like a chemical balance and uh like what medications and everything, and um, I'm part of a really good um full-time full-time group therapy program. So they the counselors help and all the it's um group like it's group therapy, so with people um with my like myself, we help each other, so that helps a lot, right?

SPEAKER_00 6:21

So when you sit there and talk about being delusional, do you also have hallucinations and are you paranoid?

SPEAKER_01 6:31

Yes, so it's a really bad place to be in.

SPEAKER_00 6:38

So specifically, where do these hallucinations come from? Do they come from the chemical imbalance um where you just start hallucinating about things, or do you feel it coming on? Like how does it happen? It just happens, or like something triggers okay, so something triggers an hallucination for you.

SPEAKER_02 7:02

Yes.

SPEAKER_00 7:07

I can't imagine that's pretty scary.

SPEAKER_01 7:11

It was yes, it was very it was horrifying because I couldn't tell what was real and what wasn't.

SPEAKER_00 7:22

So how did you know it's not real? Was there somebody there to help you? Were they like, hey, why are you saying this? Why did you believe this? Why do you think this? How does the whole like you're obviously aware of it now, but when you're going through it, what what's the realization for you when you're going through it? That do you know you're going through it or you don't know you're going through it?

SPEAKER_01 7:52

You don't know you're going through it, but my husband really helped me, and then that that's when um we went to the hospital, and then that's when we would go to the inpatient care and then start medication. But the tricky part is to find the medication that helps you, and then you you have to not give up when you go on to medication because the medication doesn't help you, everyone, everybody has different strengths, yeah. Yeah, different medication, so you have to like be patient with each medication.

SPEAKER_00 8:44

So when you're going through this, and what would happen if you were alone and didn't have your husband by your side? What do you think would happen? Is it like an all alternate universe for you, or would it be able to say, wait, something's not right here?

SPEAKER_01 9:03

That's what I'm learning in my in my program. Um, I mean for real. I'm just thinking for real. But I mean, honestly, I um I called the cops a couple times because I was afraid. I called the the ambulance because I I was so scared and I thought like I needed to go to the hospital, I would call and I would go there to get help. When I knew something, you know, I knew something was really wrong. And I need I needed help.

SPEAKER_00 9:51

So when you say you're going through this and you're going through therapy, they're teaching you how to handle this, if you don't have someone with you, what kind of things are they teaching you and making you aware of?

SPEAKER_01 10:05

Um, I would like go through like uh a checklist. Like if it's am I going through like an emotional part or is it um fact-based? Is it different, like a little checklist, um things to do with anxiety, um eating healthy, exercising, making it it's like a toolbox of things that you can pull out and to keep keep yourself busy. That's another thing that's good. And you need to um to keep taking your medicine because sometimes people go and be like, oh, I'm good now because I'm on my medicine, so I don't I don't have to keep taking medicine anymore.

SPEAKER_00 11:07

So when we were talking, and I did some research on this, uh schizoreflective disorder affects 0.3% of the population. That's a really small number. How did you get so lucky? Maybe you should go play the lottery.

SPEAKER_01 11:29

I know, right?

SPEAKER_00 11:33

Um, and this is all based upon a chemical imbalance.

SPEAKER_01 11:39

Yes. Um yeah.

SPEAKER_00 11:43

So is the chemical imbalance coming from the stroke and aphasia, or is this something completely different?

SPEAKER_01 11:51

It um it started after the stroke and combines with um I think it's the the white matter and the green bright matter in the brain really pushed it, and then the bipolar just kind of pushed it. Um, I also was social isolation really pushed it over, and just about everything that I was doing was not good of what I just kind of everything piled up and then just exploded, exploded.

SPEAKER_00 12:39

My uh nervous breakdown had a nervous breakdown, and then you went to solitary mode, uh, type of mode from where you disappeared and just all to yourself, and then you have all these things like paranoia and all the other stuff just led to your nervous breakdown.

SPEAKER_01 13:01

Yep. Well, they also called it psychoid.

SPEAKER_00 13:05

Um what's it called?

SPEAKER_01 13:08

Psychosis.

SPEAKER_00 13:10

Psychosis, yeah. That's where you have delusions and the things that you're thinking. Yeah. What kind of medications are you taking to keep this in control?

SPEAKER_01 13:23

I think there's an anti-psychotics, and then a mixture of antidepressants, and then it just takes uh a while to um to get the right spot or to get the right levels, to get the right which ones, and you know, everybody's different.

SPEAKER_00 13:51

So basically, it's to level out your chemicals in your brain. It's almost like a scale where the dopamine and serotonin levels have to equal out.

SPEAKER_02 14:02

Yeah. Yep.

SPEAKER_00 14:05

You're talking about being stressed out. So what kind of stress did you have to set off these triggers?

SPEAKER_01 14:12

Yeah, it's there was just a lot of things going on in my life, but just you know what was good personal.

SPEAKER_02 14:25

Yeah, yeah.

SPEAKER_00 14:27

So that caused you to be depressed and isolated.

SPEAKER_01 14:32

Yeah.

SPEAKER_00 14:34

And then all the other things came in.

SPEAKER_01 14:36

I just wasn't handling it right. And I know that now, and then I know for the future that I need to handle my stress right.

SPEAKER_00 14:51

So this is a constant learning experience for you.

SPEAKER_01 14:54

Yes.

SPEAKER_00 14:56

You would think that I know by now, but you would think you would have all the answers by now with all you've been through, right? And you're still learning. So you're an awesome person, you have a great personality, you're funny, you're kind. How do you get through all this when some people would have just thrown their hands up? What keeps you moving?

SPEAKER_01 15:23

Well, I try to stay positive, humor, um, I just have to keep one stuff in front of the other. Like I said, I have such an obsessive for life, and I just I just I want to keep helping people, which is why I still do the podcast, and I still um I want people to know like what I've been through, so I try to help what people you know, so like at least for this podcast, I want people to know that you can go out and get help, so you're not going through this now, like, yeah.

SPEAKER_00 16:24

By the way, I'm sure all the viewers and listeners will see this, but every time I see you, you look better and better. What are you doing to help improve the way you feel and the way you look?

SPEAKER_01 16:36

Um, in eating right, um, doing a lot of walking, um, trying to always not like sleeping away, always getting up. Um I just have to keep going. Like I'm gonna you have to just keep moving. Just I have to try to not just sit around. I have to keep yeah.

SPEAKER_00 17:15

Okay, so what happens on bad days when you're sad? How do you motivate yourself to get up when you really don't want to?

SPEAKER_01 17:23

When I when I don't want to get up, I just I force myself. I I'll just sit there, I'll get up, like put my get up, but I won't stand up, but I still have to get up. If I get up out of bed, then I'll go to the couch, so I'm not in the bed.

SPEAKER_02 17:46

Right.

SPEAKER_01 17:48

Go for a walk or try to just you just first you have to get out of bed. That's the first thing. But if you go at least to go this go on to the couch and then try to take it from there, but as long as you're out of bed, you know, that's the first step. Even if you just have to go get the mail, or if you have to get dressed, or take a shower, or do something, you have to try to take baby steps.

SPEAKER_00 18:30

I have a question for you. When we talked the last time, you said you have bipolar one.

SPEAKER_02 18:38

Yes.

SPEAKER_00 18:40

Tell the audience what bipolar one needs.

SPEAKER_01 18:45

Um the difference between bipolar and polar bipolar one or bipolar two. I think they just I'm not sure.

SPEAKER_00 19:03

I think you told me last time that it's high for months and then the press for months.

SPEAKER_01 19:10

Um I I I can go months with all the highs, or uh sometimes I have the months with the lows. Or it's not just the click of the switch. It's sometimes, you know, it goes months to months. You don't just stand there with someone sometimes and just be like, hey, and then by with different moods, it just goes long periods of time.

SPEAKER_00 19:50

Now, when there's a transition between high and low, is the transition gradual or is it immediate? Or does it trigger that is it a trigger that causes the transition?

SPEAKER_01 20:03

For me, it's pretty much uh it'll trigger something and then it'll it might go for months for a time, or it's just a the brain chemistry. If I if I just keep or when I get into my manic stage, I'll just I won't be able to sleep for a while, or I'll just um not really start being depressed. And then that's when I do my if I in bed, then I take my baby steps, and like since it's I've been in bipolar for so long, I know if I don't break break my root if I break my routine of getting up and getting changed and taking my medicine, then I know I'm headed to I'm headed for something. Um I'm headed for not like I have my routine, so I have to make sure if I start break my routine, then I know that like I'm getting like more depressed, like that I'm a headache for.

SPEAKER_00 21:44

What are some episodes that trigger hallucinations?

SPEAKER_01 21:52

It's not like on drugs or anything, it's like not on drugs, so it's not like when movies and it's not like like things you see on TV. Um for me anyway, this is all about my personal experience. It's not like um everybody's different. So if I like hallucinate, I'm hallucinating like people outside or um people talking about me when they probably aren't um they are or they aren't um or I would ask them and they warn or they're not like out there or it's just and then like when you have a delusion they're not like the whole situation isn't really happening.

SPEAKER_00 23:04

Okay so just to kind of give an example to the listeners out there would it be like your husband is sitting in the same room with you and you ask him did you just ask me to go to dinner and then he says no exactly right I'm sure it's very confusing almost like a voice in your head what's wrong yeah what's real or not exactly or I wouldn't say yes and then I'll come back and be like are you ready to go and they'd be like what are you talking about?

SPEAKER_01 23:48

Be like we're going out to dinner it's like but I didn't say anything about it I'm like yeah you did what is some advice you can give other people um I would definitely tell your family you want them to have family support definitely your loved ones and you you want them to let them help you um like I said I'm I am very grateful that my husband helps me and understands what's I'm what I'm going through.

SPEAKER_00 24:40

Right. Because not everyone is going to have a supportive family like yours. So communication is very important. Have you had incidences where someone loses patience with you? And like what's the best way for you to communicate to people like look you don't need to yell at me you don't need to be impatient you don't need to jump at me I'm experiencing this I wish I wasn't experiencing this but I am so the best way to handle me is blah blah blah and just step away you know calm like calmly and then just check of the situation and then go back and reassess the situation of what's going on do you let people know how to handle you do you have boundaries where you say this is acceptable and this is not acceptable or this is the best way to handle me um yeah that's pretty much what you said yeah so it's an important thing in trying to get people in recoveries to understand the stuff that's happening to you in your brain and that's why you titled this episode My Brain is an asshole yes so why do you think your brain is an asshole because it's it controls everything. I don't like it well your brain is doing good I mean look how far you have come you have what spent two years just in your own backyard looking at birds and you couldn't talk yep so I still love my bird yeah I think maybe your brain is getting a lot better um so physically I want to talk about physically how are you physically you look good physically so it's like all your other like physics like your health like as far as like your heart and your like um cholesterol and all these other things like your kidneys and your liver like all that stuff is good right um I still have b high blood pressure okay um cholesterol is okay um my side of my right side of my body is still numb so it still affects a lot what I can do right but if I can't do math or numbers numbers can't very hard for me did you get banned from Amazon yet um it's yeah Amazon if if I order stuff I have to like actually I do put stuff on the cart and I'm like how much is that again so your vinyls are good this is a brain injury that you have from the stroke and it seems like you get to a certain level and then there's another setback and then you have to rebound and overcome again and again do you ever get discouraged and wonder if it'll ever stop with all the adversity of you overcome what's your mindset like um definitely the beginning of the year a little bit before pretty much all last year I'm not I don't really remember that much but now that uh starting to like look back but what what was delusions what was hallucinations and do I know what was real I'm not sure do I still believe what was still delusions yes still working on that it's awesome I still have a lot of work to do with that right art it's been a while since we've done the podcast you had disappeared online so what I'm asking you is you told me at the beginning of the year you became more paranoid and there was an episode you don't have to discuss it but it was an episode that triggered you right yes okay so that episode brought you into a paranoia and isolation yes which led to your nervous breakdown when did you decide to call and go to the emergency room then I um went yeah then I went to the emergency room went into the hospital came back out went back to the emergency room and then went to inpatient and then I we started um going through the medication and then I'm in the outpatient program the full time still working out still working on myself to be better myself well that's awesome now let me ask you a question now there are meds and therapy involved what is more important to you the meds or therapy or do they work hand in hand?

SPEAKER_01 30:57

That's hard I guess the medicine because that's 24 hours what does a therapist do to get you through this? I guess that's what I'm working on and the good group therapy helps too when you're talking um about your issues in the group because then you also hear from other people that hey um I'm doing I'm not going through this alone in the same situation to like oh my God we're we're going through the same thing.

SPEAKER_00 31:40

So Kristen it's essential for medication and therapy to complement each other.

SPEAKER_01 31:45

My question to you is you talk about therapy you have two types you have one-on-one therapy with a professional therapist and then you have group therapy while therapist offers individual guidance group therapy provides a unique perspective because participants have experienced similar challenges the therapist has the expertise but lacks a knowledge of how it actually feels as a group you can relate more which I'm sure creates a supportive environment that complements traditional therapy does this all work well together or what is your preference group or personal therapy group therapy helps me um good grades because we've been through things that the psychiatrist and the the therapist don't haven't experienced what we haven't and it's when we're going when we're in the group we're like oh my god I've been there I've been I've had that happen to me and it's a great um and it's a it's better to talk about with each other um it's just it's I think it's better with group therapy from my opinion that it's rather than saying okay I thought it was only me so now you get to feel like oh okay it's also a kind of way of making you feel a little bit more normal right yes yeah yes so when it comes to the anxiety that you feel where does that anxiety originate from what kind of feeling is it for me I get it mostly sometimes I get it in my upper back sometimes it gets in my stomach or sometimes it's in my head um anxiety actually also messes with your vision um when I finally went to the eye doctor um it helped or uh glasses helped me for my distance and my mirror um and also I had um blood pressure in my eye was high too I almost had to get drops and turned out that anxiety messes with your vision too oh wow so when you say vision is there pain involved within your eye or is it just more like your eyesight is blurry um just for me it wasn't um painful but I thought it was just maybe for my age or or medicine sometimes medicine can mess with your vision but when when I finally went to the eye doctor they said that anxiety can mess with your vision as well oh wow I didn't know that so I'm sure other people be glad to hear that as well so Kristen to wrap this podcast up what advice do you have for people out there maybe something similar to you I I want everyone to know that there is help out there and I want people to know that you're not alone and I it just like when I always do I tell people my truth and I I want people to know that yeah that there's there's you're not alone and there's people like me and there's it doesn't matter ace your race or age or everything like it affects everybody it it could be your neighbor it could be your family member it could be your teacher it could be a coworker it could be anybody it just it doesn't discriminate yes it's crucial for people out there to seek support especially during challenging episodes like depression even if it's not directly related to a stroke you might be experiencing certain emotions without fully understanding why if you're going through anything please consider reaching out to someone for help we've compiled a resources page on Kristen's website it's KristenTokford.com you can find the link below and visit the resources page to connect with someone who can assist you with whatever you're going through so in closing Kristen is there anything else you'd like to tell your viewers before we wrap this podcast up today live every month everything like you last go out there do what you want to be go out there and live life huh yeah do it are you gonna jump out of a plane today I could I want to go size everything you just brought up a good point live every day like it's your last so that's great advice for people so what are some of the things that you do to keep yourself happy um I love nature anything that outside I like to do um I like to do I need to get back out there since I've been isolated for so long um I like to do pageants I like to model with SU and um I just need to um my uh get out there again and I want to try to ride a bike again um that's a goal one of mine for the people who don't know what is su is supermodels unlimited and um I love that's where I met you yeah I love going I've I've been modeling with them 12 13 years now and I love with being around them because they're so positive and whenever I'm feeling down I love going with them and you know sometimes I think like they save my life in a way because they're I'm always they're just they're just a group of great people yeah it's definitely a great place to be for people that are aspiring to be models or people that are models.

SPEAKER_00 39:30

And like with you you appeared on billboards in Times Square. So that's quite an accomplishment right for being in the situation that you've been in and then the comeback. I mean people love comebacks so for you to be gracing the billboards in Timesquare is quite an accomplishment so a big round of applause to you and you must be very proud thank you your brain may be an asshole but you're still a super model thank you until next time everyone stay safe and live every day like it's your last