Rupture: The World of BestGuessistan

His Scans Were Clear, His Life Was Not | Rob Baugh on Living With TBI

Wendy Lurrie Season 1 Episode 24

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After a traumatic brain injury during the pandemic, Rob Baugh was told what many concussion patients hear: go home, rest, and you'll be fine.

He wasn't.

Years later, Rob still lives with chronic headaches, aphasia, cognitive challenges, and the ongoing reality of an invisible disability. In this conversation, Wendy Lurrie and Rob explore what happens when medical systems fall short, how brain injuries reshape identity, and why the phrase "just a concussion" can be so damaging.

They discuss caregiving, workplace accommodations, emotional changes, advocacy, and the difficult process of learning to live in the "after."

For anyone navigating brain injury, chronic illness, disability, or another life rupture, this episode offers validation, honesty, and hope.

Check out Rob's podcast, Life Rewired here: https://www.youtube.com/@liferewiredpodcast

Watch the full episode on YouTube: https://www.youtube.com/@BestGuessistan

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SPEAKER_00

Welcome back to Rupture, the world of Best Guessistan. I'm Wendy Lurie. Just a concussion. That's what Rob was told after his head injury. And that's what untold numbers of people are told after theirs. Just rest for a few days and you'll be fine. Stay off screens for a week and you can go back to work. That guidance is wrong, and we know it's wrong. We also know how often it's given. And the whole notion and language around just a concussion dramatically underplays and minimizes the lived experience of having a concussion, the persistence of symptoms, the lack of effective treatments, the unrelatability which leads to isolation. That language, that idea makes it so much worse. And let's give this a sense of scale. About 80% of all TBIs are what are considered mild. Don't get me started on the word mild. Rob and I talk about that too. That means that 80% of TBIs are concussions. And about half or more of those don't resolve within a few weeks. So we are actually talking about a massive, underserved population living in a difficult situation that is made so much more difficult by the dismissiveness of the language and the idea that it's just a concussion. There's no such thing as just a concussion. Here's my conversation with Rob Ball is an author and podcaster whose life was ruptured by a traumatic brain injury. He hosts a podcast called My Life Rewired. Love this podcast, you should totally check it out. And I was honored to be a guest a few weeks ago. Today's conversation actually begins with a paperclip, or more specifically, that Bendy Metal thing. Because after his traumatic brain injury, Rob found himself in a place that was strange, but is also familiar to a lot of people with brain injuries. The object was there, the meaning was there, the word was not. Welcome to Rupture Rob. Thank you. Thank you for having me. Happy to have you. So let's start at the beginning.

SPEAKER_02

Tell us who you were before the TBI. Sure. I had so many aspirations. I the thing behind me, that piano, that was my daily inspiration. And I I played piano in church and I did the preludes, and that was my life, really. And I found that after the brain injury, the banging on the keys, not so much. So I did give it away, but here's here's something that's really interesting. Before the brain injury, I could only play in one key because I played by ear. After I got my brain injury, I found that I could play in three different keys. Wow. Wow. Silver lining. Who knew? Right. And then the other passion I had, I actually wanted to become a professional baker and open my own bakery because rewind quite a few years. I loved the cake boss. That was my show. Never missed another one. And so my wife, he come, he he come, listen to listen to my English. He came to E he came to Kentucky, which is right across the bridge from us. And my wife said, Um, I'm gonna surprise drop and get him tickets to go there. So I found out like the day before that we were going, I was over the moon. So first thing I did was I bought his cookbook, you know, and it it was a nice show. Got to learn a bunch of techniques and everything. And to this point, I had never decorated a cake.

SPEAKER_00

So you baked but didn't decor wait, you baked but didn't decorate. I bake but don't decorate. So I get that.

SPEAKER_02

Yeah. Okay. So at the end of the program, he he had he says, If you bought my cookbook, he says, go to the back of the book, because this was right before Thanksgiving. And he said, There's a a a 3D turkey, and he goes, I want to challenge anybody that bought my book to make this turkey. So I look over my wife and I said, I think I'm gonna do that. She started laughing her butt off. She goes, You make a turkey? Sure, let this is gonna be really nice. So I go, okay. So the week of Thanksgiving, we get the day after Thanksgiving off everything. So she had to work and I didn't. So I went to Joanne's, I bought every cake supply, decorating supply you could think of. And I came home and I made that cake. I took took a picture of it and I texted it to her at work and she said, Where'd you get that at?

SPEAKER_00

You had to made it, right?

SPEAKER_02

I made it. Well, she shows her friends, and then all of a sudden her friends are going, Do you think Rob could make me this cake or that cake? Well, all of a sudden, everybody's wanting all these extravagant cakes, and Hella loved it. I love the challenge, and I I love spending one, three hours in the in the kitchen for days cooking, you know. That could not exist after the brain injury because it was so stressful.

SPEAKER_00

What was the most complicated cake besides the turkey that you made while you were doing this?

SPEAKER_02

Gosh, I made a ballerina cake. That was really cool. But probably the most complicated one that was the one that I've got the most compliments on was a Marvel cake where you saw the the fist of the green guy, here's my aphasia come out. That's okay. That's okay. The fist of the green guy coming out of the cake, and it was like three tiers. And then after I made that, I got another cake order. Can you do that one for me as well?

SPEAKER_00

Sure, why not? That's amazing. That's amazing. Again, lifelong baker, not a decorator, but nothing but respect for people who can do what you what you were able to do. So that was all the before. That was the before. What happened? What was the rupture? What was what what was your accident like?

SPEAKER_02

Well, I work from home, and that's a plus right right out of the gate. It was during the pandemic. We were probably, gosh, two months-ish into it. And that's when they were shutting everything down, you couldn't go anywhere, you know, that great thing. I did what I do every single day. On my last break of the day, I went outside to feed my fish. And because we have koi pond in the backyard. And I was coming back in the at the back door and a bee flew by my head as I was opening the screen door. Well, I'm severely allergic to bees. So it freaked me out. Because one put me in the hospital once. So I wasn't going to take my chances. It was justified. Yeah. So I pulled the door open as a duck and everything went gray. I don't know how long I was out, probably a minute, tops, but when I came to, I was holding my head. The first thing I thought was, I'm gonna have a big goose egg on my head. So I pulled my hand away from my head and I looked down and all I saw was red. I thought, what do I do? Well, my wife had recently lost her job that she'd been there for two zero or two one years, something like that. And they just they just closed the company up. They found out on a like a Monday or Tuesday that Friday was your last day. So she was she found herself like a lot of people at home trying to find a job that worked out in my benefit because had she not been there, don't know what I would have done. I walked over to the window, she happened to be in there cutting a pineapple up, and and I'm I'm waving at her and she waves back. I'm like She didn't see the blood at first.

SPEAKER_00

She didn't see the blood.

SPEAKER_02

Nothing bleeds like a head wound. Nothing. Well, she thought, okay, he wants me to come out and see something the fish are doing. So she puts her knife down and walks out. And the first thing she saw was the sea of blood everywhere. She goes, What happened? And all I could say was, B, B. She goes, This is not from a bee. And finally she calmed me down. I sat down at the picnic table and I and I explained to her what happened. And she says, We got to get you to the ER. Well, you're gonna find this hard to believe. But men can be very stubborn. I had no idea.

SPEAKER_00

Aren't you shocked? Let me write that down. Men can be stubborn. With a brain injury, you don't remember anything, so I have to write it down.

SPEAKER_02

So I was very stubborn because I was still on the clock. And I said, No, we gotta call my boss. So she quickly figured out that the only way she's gonna get me to the ER was to satisfy me to call my boss. So she ran in and grabbed my cell phone and came back out. We called my boss, and I I think I couldn't get any words to come out. I think I think my wife ended up talking to her. And she said, He's hit his head, he's bleeding bad. I need to get him to the ER. She goes, Go, go to the ER. But that was all in the I just needed that satisfaction, you know, because I was like, I I just couldn't leave my employer. Of course.

SPEAKER_00

What happened to Rob? I do understand that. As as crazy as it sounds, I I would have done exactly the same.

SPEAKER_02

Yeah. So she gets me, I keep calling her Dell Earnhardt Jr. because we live it was probably about a one eight to one nine minute drive to get there. And she got me there in one one minutes. She was booking it.

SPEAKER_00

Dale Earnhardt, indeed.

SPEAKER_02

Yeah. But you know, when you have your your loved one sitting next to you and you don't know what's going to happen to them. You know, she didn't care if she got a ticket or not. She's like, we're getting you to the ER. But I really the conversation that she didn't hear going on in my head was something that probably would have freaked her out because I thought I was cashing it in. I really did. I thought, this is how I'm going to go out. And halfway there, I started getting sick to my stomach and I said, I don't think I can walk. So she pulls up to the front door and she jumps out and runs in and grabs a nurse, and she's like, Grab a wheelchair. So they had no idea what they were going out to at that point. And if you remember back, they did not let people go in. You were on the city. Not during COVID.

SPEAKER_01

Yeah.

SPEAKER_02

Yeah. I couldn't tell you what my name was.

SPEAKER_00

You had to go in. I'm sorry, you had to go in by yourself?

SPEAKER_02

At that time, they were making people go in by themselves, yeah.

SPEAKER_00

Man.

SPEAKER_02

But I I got in there, I couldn't tell you what my name was. And the nurse says, We're gonna let your wife go back with you. So that that worked out in my favor to you, because I was in no shape to be answering anybody's questions. And then don't know if you want to hear this part or not, you can cut this out if you want to, but they get you back there, and the first thing they wanted to do was, you know, clean the wound and staple it because it was like a two to three inch slash ration. We don't remember how I don't remember how big it was, but I know I got five staples in my head. And the first thing they do is they come in, they say, We're gonna numb the area. Now, this might burn just a little bit. A little discomfort. I felt like the flames from hell were inside of my skull, and it didn't even numb it because the first staple they put in my head was almost broke that arm reel off that bed. And they she goes, Well, we're gonna have to numb you again. And I looked at that nurse and I said, No, you're not. I said, just finish up. She goes, What's gonna hurt? And I said, Yeah, it isn't any more painful than what that shot was. I said, just do your job. So yeah, we we survived that. We went through the all the scans and all that, and like, well, the scans were clear? Yeah. Very common, right? I thought, okay, great. I I just maybe have a slight concussion and I'll be fine, you know? It's just a concussion, right? Just a concussion. The the magic thing, they always say, just a concussion. So they send you them on your merry way, no roadmaps, no nothing, you know?

SPEAKER_00

Did they advise you to go see your primary care or neurologist?

SPEAKER_02

They well, they didn't even they didn't even name a neurologist. They just said, go home and rest for a couple of days, go back to work when you're ready, and follow up with your doctor. Yeah. And that really burns me up, knowing what I know now. That's such bad advice to give somebody that just hit their head.

SPEAKER_00

You know, it's it's it's interesting that you say that because one of our recurring guests is uh was my OT. She's a doctor of OT. And she talks a lot about this problem that even though there was research and serious clinical trials done like 10, 15 years ago, those showed that they shouldn't have given you the guidance they did. Those well, the the guidance of like lie in a dark room, cognitive rests, all of that stuff is the wrong guidance. And that people who actually re-engage with their lives as quickly as possible and didn't shut out social lives and screens and all that actually recovered faster. That information hasn't trickled down to all neurologists, let alone to primary care. It still hasn't. It ha she I asked her why. She said it hasn't made it into the training material. Right. So you get this battery.

SPEAKER_02

Yeah, because they're still training on things that they was written two, zero years ago.

SPEAKER_00

Exactly. Even though the science has changed and the understanding. It's it's really infuriating knowing now what we know. So what happened next? Did you go see your doctor? So we did follow up with our doctor.

SPEAKER_02

I went home, got in bed that night, and I couldn't sleep. I think I got an hour of sleep that night because my head was just pounding. Yeah. And then I thought, okay, this is probably gonna be a couple of days and it'll go away, you know, whatever. Well, because it's just a concussion, right? Yeah, it's just a concussion. And then one day turned into three days, which turned into five days, and I was like, I still have this pounding headache. So my wife says, Okay, we're gonna follow up with the doctor, tell her. And my doctor was the one that said, We need we need to get you in and get an MRI done, see what's going on. And then she also said, You need to find a really good neurologist. She gave us the suggestions, but we we are the kind of people that do our research. I'm a big believer in going to WebMD, not WebMD, the health grades. Yeah, health grades, right? Yeah, I always research. Check out every doc in advance, yeah. Yeah, because I found one thing to be true. People don't go on there to say, this doctor's great. No, they don't. A few people do, but mostly they'll go on there to say, run away. So if they've got three or four reviews and they're five stars, not bad. So the the ones that she suggested, they're they were older doctors who are still practicing what they learned back in med school years ago. Way outdated. Mm-hmm. So my wife said, if we have to drive to two states over, we're gonna find you a neurologist. So uh we did. We we ended up going to Kentucky, and the first one he he didn't have horrible reviews on health grades, but they were a lot better than the other two doctors. So we thought, you know what, the hey. So my wife, again, you couldn't she couldn't go with me. So she drove me over the day before to show me how to get there so I would be okay. So the next drive yourself? I did drive myself. And my gosh, this is another flaw that I have, which turned out to help me again. I'm very paranoid about being late. So if I'm a half hour early, I'm on time. Okay, okay. I left an hour early to make sure I'd get there, and it's only like five minutes across the river. I drove across the river and I drove out to a place that I worked at two, zero years ago. I pulled in the parking lot and the business is out of business now, which is what made me think, why is there no one else here? And then it dawned on me. I was going to my neurologist. So then I had to backtrack and go all the way back downtown to to uh downtown Louisville. I got there with five minutes to spare. I've later learned that if you're even one minute late to see this this guy, he won't see you. Seriously? He will not see you. Wow. Yeah. So I I got lucked out and I got there. You got in right under the wire. Right under the wire. And I got in there and they did the preliminary stuff and all that, and he takes me to his office and he tells me he is the best neurologist in this area. He had right. Like, I'm thinking, well, great, I got the I got the best doctor in the world. I soon found out that that was not the case. The first question he asked me was, What is your date of birth? My mind went blank. I could not remember my date of birth. And I said, I don't know. He slammed his pen down on the desk and he said, The questions are just gonna get harder from here. My mind is blown. Yeah. Almost bald right there in his office. And I thought, nope, you're not gonna show this guy that you're weak. Nope. You can go into your car and cry afterwards, but we're gonna get through this.

SPEAKER_01

Right.

SPEAKER_02

And I didn't even tell my wife, which I should have. I've learned since I should have. Yes.

SPEAKER_00

Tell her everything.

SPEAKER_02

Yes. I did tell her down the road, and then she was so furious. She said, Oh, that I could have been there. She said, because he would have not wanted me to talk to him. I believe it. But he, you know, I asked about action plans and all that, and his advice was to wait two years to see if I got better.

SPEAKER_00

Two years? Just wait for two years? He didn't recommend rehab treatments. Not a thing. Unbelievable.

SPEAKER_02

My wife was blown away by that. And I I thought, yeah, I would I would have thought he would have wanted to try something. He did put me on an eptileptic seizure medication. To help with the pain? Well, he thought, yeah, to help with the pain, and he thought, and he warned me because keep in mind, at that time I weighed 150 pounds. You can see that that changed. But he says, now I want you to make sure to be eating because this medication has been known to make people lose a lot of weight, and you can't afford to lose any weight. It's like, okay, well hit pack the pounds on me. Did it everything actually, everything that they tried me on, every time they tried me on a new medication, bam, more weight.

SPEAKER_00

Really?

SPEAKER_02

Yeah.

SPEAKER_00

Did did the medications help? Besides the fact that they made you put on weight, did they help with the symptoms? They did nothing for the symptoms.

SPEAKER_02

Nothing at all.

SPEAKER_00

Besides the epileptic one, do you remember any of the other meds? Because what I've seen a lot is um a lot of repurposed migraine meds.

SPEAKER_02

Yeah, a lot of those. I they went through the whole gamut. Yeah, they did.

unknown

Yeah.

SPEAKER_02

They even tried some of the newer ones that had just got approved on on the market. And I had some, it'll come later in the story, but this the second neurologist I had, he actually sent me home with some samples with some of the newer ones that just came out. And they insurance wasn't gonna pay for them, and it they were like, gosh, eight zero, zero dollars. Yeah, those new ones. And he's like, We want to try them first before we go through all this because there's no sense in you paying all that money if it's not gonna work. And one dose made me sick to my stomach. And I said, Nope, this is not for Rob. But yeah, when I told my wife about the first neurologist saying do nothing for two years, she goes, I don't think so. So she started Googling, you know, what do you do for brain injury? And she found, well, the first place she sent me to was occup for cognitive therapy and speech. I was having very difficulties with speech at the paper.

SPEAKER_00

Let's talk about that. Yes. Yeah. Talk let's let's talk about the speech and the paperclip and and how we began this.

SPEAKER_02

Yeah. So basically the the first six, eight months, I stuttered so so bad. Had you had a stutter before? No. But yeah, I and I I do now if I get really excited about something or the cognitive overall hits. Yes the stutter's bad. But the the one thing that happened was the aphasia. Now I didn't know what aphasia was at the time. I would say things like one day I was getting out of the shower and I I looked at my wife and I said, 'Cause she come in there and she says, Can I get you anything? I said, Give me an earstick. She goes, Q-tip? What? Q tip. Earstick. She goes, Are you talking about a Q-tip? I said, Yeah. So now there are there are always ear sticks in our house. Because even though I know the name of it, it always comes out earstick.

SPEAKER_00

Yeah. So I get it. This happened to me just the other day. I was trying context. I won't even explain the context of this, but I was trying to say violent felon. And all I kept saying was violent fennel. And now I have these nightmares about angry vegetables chasing me. And I didn't really have speech issues, but it still pops up periodically where I just can't access the word. But you had a lot of challenges with uh with language, right? So you you have the stammer, you have the aphasia.

SPEAKER_02

Mm-hmm. And oh, the metal bendy things to be on that, it was so funny. Because right before we our interview, I've been helping clean my mother-in-law's house out. She passed way back in February, so we're trying to get the house cleaned out. And I'm going through her desk and I found a big box of metal bendy things. And I said, Great, I'm I need these. You do, you do.

SPEAKER_00

Like you need the ear sticks, you need the metal bendy things. But I think you told me like when you would go to restaurants, it was hard for you to order.

SPEAKER_02

Very hard because and my wife still does this, but we'll we'll actually have a conversation before the waiter comes to the table. She'll say, Now, do you know what you want to eat? Yes. Do you want me to order it for you? Because I I do know if I'm going to be able to get it to come out or not. You know? How do you know? If I'm overloaded, I'm I know I'm not going to be able to get it to come out. So it's only like when you're feeling your absolute best in a relative sense. Yeah. If I'm on top of my game, I'll say, let me try. And then you jump in if I can't get it to work. You know, because one time the the waiter came to the table, and this was before we would have these conversations. And I said, I want to get one of those brown things. And he goes, What? And Sheila looks at me, she goes, she goes, Are you are you talking about a potato? I said, Yeah. That waiter would have never figured out what I was talking about.

SPEAKER_00

Not a chance.

unknown

No.

SPEAKER_02

Yeah. But she she knows. She knows me. She said, I'm she we call it Rob B's when I speak. So she goes, But she's fluent in it. Is she fluent by now? Fluent. Very fluent. You know what boggles my mind is I'll say, Do you want to go to that one place? And she'll say, Are you talking about cheddars? Yeah. How did she get there that one? But she knows me that well. So yeah. So you do you still struggle with it? I mean, that this hasn't gone away. No, it's it's still there.

SPEAKER_00

And did you do did you do therapy for this?

SPEAKER_02

We did, yeah, we did therapy for that. You know, and I thought I was crazy for the longest time for the words that were coming out of my mouth. And, you know, I would know that it's a a spoon, and I would say, you know that small shovel? Hmm. Because I'm describing what they do, you know, because like shoveling food in your mouth. And it wasn't until I was watching, I don't know, you remember the old TV show House MD? Sure. Sure. I love that show. And I was watching it one night, and there was a lady on there that was talking like me, and I'm like, I do this. And he called it aphasia. And I was like, it has a name. I Googled it that night and I started reading it, and I said, I I was so excited, I had to show my wife. I said, What I'm doing has a name. Yeah. I've never heard of it before.

SPEAKER_00

Why would you? I mean, unless you you didn't you there's no context for it. How did people okay? So that's how your wife deals with it, which is she speaks fluent Robbie's. What about work and friends and family? How do how Does everybody in your orbit deal with the language difficulty?

SPEAKER_02

A lot of people don't see it because when I am I'm at worst, I don't go to the house. I don't even do my podcast when I'm at worst. You know, they think Rob looks great because he'll sit in front of a camera and talk to guests. And then what really tipped the scale was when my I told you my mother-in-law passed away back in February. And at the funeral, the first day of the visitation, I was off the chart with my symptoms. I could not speak. Everything coming out of my mouth was gibberish. And the people in our inner circle that thinks Rob is just on top of his game, they would come in and start talking to me, and I would be like the heeba heeba hooba, you know, or or what however I was talking. Or I would get a long sutter out and get like, and yeah, and you know, and the the conversations with me were very short from those people because they were uncomfortable because I'm like, What's of course Rob? Yeah, people don't know what to do.

SPEAKER_00

It's hard for people to know how to react. It's not their fault, it's just how do you even react?

SPEAKER_02

So after the funeral, my wife comes to tells me she said, a lot of people's eyes got opened. She said, Because you didn't see this. They came to me and they said, Is Rob okay? She goes, Yeah. And she was, they're like, He can't, he can't hardly speak. And she goes, Yeah, that's pretty, pretty normal. He's having a bad day, and that's this is his life that you don't see. Yeah. Wow. And work? How did you manage work? Work was very difficult, but I've done the job since 06. So the work part was okay. Well, you had muscle memory for that, right? Muscle memory, but I'm not as fast as I used to be. Our our production used to be like eight claims an hour, and I was doing like three zero claims an hour. I don't do anywhere near that now. No. I still, I still do more than what I'm supposed to do. And my boss is like, you we have people on our team that are completely cognitive, you know, neurotypical people that could do this and are struggling to keep up with you.

SPEAKER_00

That must have felt good at least, right? Yeah. There's very little in this process really makes you feel good about yourself.

SPEAKER_02

Right. And she is so good. She works with me. And there are things that that they have thrown on us since my brain injury that I cannot comprehend. And we have this thing called mentor. It's our mentor, and it's everything documented out step by step. If if this, then this, then this. You know as well as I do. When you give me a line of information, okay. You give me a paragraph, forget about it.

SPEAKER_00

Unthinkable.

SPEAKER_02

Yeah. I'm rereading the same paragraph going, I don't know what I'm supposed to be doing. So when those things happen, she well, we'll let our team lead work that claim for you, or we'll let so-and-so work that claim for you. Okay. We kind of trade it off. And my whole team just jumped in and they they really helped me.

SPEAKER_00

You're so fortunate to have had an to have an environment like that. I mean, yeah. We know a lot, we all know a lot of people with these kinds of injuries who aren't able to hang on to their jobs, couldn't perform at the time. I mean, I couldn't, but you're fortunate in that way. I mean, again, it's like we look for the silver linings where we can find them. Yes.

SPEAKER_02

And you know what else is really funny too? I I am what I call an email hoarder. What does that mean? I keep every email that I get. I don't delete emails. Yeah. I have my welcome email, and I've been there for almost two zero years.

SPEAKER_00

So if you were an email, I can find it. Two hoard emails. Are you a hoarder in any other way besides email? No, just email.

SPEAKER_02

Just I'm an email hoarder because you never know when you might need it. Were you did you do that before? Well, I've always done that.

SPEAKER_00

You've always done that. Okay. But it comes in handy now.

SPEAKER_02

But the the thing is, I went back to when I had my brain injury and read some of the emails that I sent.

SPEAKER_00

Yes.

SPEAKER_02

My goodness. Some of it made I don't understand now what I was trying to say back then.

SPEAKER_00

Yeah, I get that.

SPEAKER_02

So yeah, my boss really protected me. So that's it. I'm so thankful for that.

SPEAKER_00

It's inspiring, actually, that that there are people like that. Did you have symptoms besides the speech language? Like what other kinds of symptoms did you have? Or do you have the for one? I've had the headache for six years. Four years, so you beat me. Does it is it all day, every day? Does it come at a specific time of day all day every day?

SPEAKER_02

Never goes away. And nothing helps with it. Nothing helps. We've we did the Botox. My gosh. I kinda called that torture.

SPEAKER_00

Yeah. I don't know how people do it. I I uh I could I have a d slightly different perspective on that. So I had a long history of migraine long before the head injury, and actually uh having a a prior history of migraine makes you more likely to have this long-term post-concussive thing that we do. So I had done Botox for that. And I'll tell you, when you do Botox when you don't have a head injury, it's not that bad. They're like little pinpricks, no, not that bad at all. When they did it to me after the head injury, it was intolerable.

unknown

Yeah.

SPEAKER_00

Completely intolerable. I said, no. And I stopped after the second, and you have to do the third. And if you wait too long after the second and you want to try it again, you have to go back to the first, which was but no, it hurts like I I'll I'll watch my language. But yeah, we know how that hurts.

SPEAKER_02

Yes. Oh yeah.

SPEAKER_00

Did they try nerve blocks with you? That was another one that I had a little bit.

SPEAKER_02

They did. They tried the nerve blocks, didn't do a thing. When we're when we did fire our first neurologist, my wife, she had to fight tooth and because it Norton's this the first neurologist was under the Norton group, and the guy that we found was also under the Norton group. So I'm sorry I don't know what the Norton group is. Like Norton Healthcare. Now, if I'd have gone to a doctor from Norton's to say the Baptist Healthcare. Oh, to a different system. A different system, there would have been no problem at all. But you were in inside the same system. Inside the same system. He had to release me. He really didn't want to do that. Well, after dealing with my wife, he finally released me. And I have to say, the new neurologist, night and day difference. Out of the gate. He even examined me, examined me. The first one didn't? No.

SPEAKER_00

What did the first one actually do besides demand your date of birth?

SPEAKER_02

He asked me all these all the all these questions. You know, I think he asked, I think he asked me my social security number. I couldn't tell you right now to save my life. I can't tell you my phone number to save my life. I have index cards that we keep next to my computer. So if someone needs it, I can pull my index card out and read read that. Or if my wife happens to be standing by, she'll say, Oh, your zip code is blah-blah-blah-buh-buh. Because everybody's a zip code.

SPEAKER_00

Yeah. But the cards are a good coping mechanism. But he didn't even examine you. Did you write a review of him, by the way, on health grades? Can't remember. I bet I did. I I'm gonna have to go look him up to see. But the second one, I mean, you you said like the second one at least examined you like it was a big deal. It's that's the baseline.

SPEAKER_02

Yeah. He he wanted to know what what have I tried so far? And my wife says, Oh, we've got him into cognitive therapy. He's like, Oh, okay, good. You know, because that was the first thing he was gonna do. Then he sent me for a neuropsyche bow. Mm-hmm. The first one never even talked about that. Of course, he didn't want me to do anything for two years. Right, just wait. Yeah, just wait and see if it gets better. And my wife's like, I don't think so. No. It's shocking. It's really shocking. It is very shocking. But he was an older gentleman. And the sad thing is I have a coworker who sees him as a neurologist. And the new guy that I go to, when he tried the the the head shot thing, I see I've already forgotten this. The Botox.

SPEAKER_00

The Botox, yeah.

SPEAKER_02

When he tried the Botox, he told me, going into it, he says, now, three rounds is all I'm gonna do. If you see no improvement after three, we're discontinuing that. Right, right. My coworker went for I don't know how many months. She goes, It doesn't do a thing for me. I said, How many treatments have you had? Nine or more. I'm like, why? Are you still going? Oh yes. I'm like, this is nuts that you're continuing to go down the same path that's not working. And he's doing it.

SPEAKER_00

Wow. Yeah. That's really disturbing. That's really, really disturbing. Okay. Let's switch gears slightly. So one of the things we talk about when we talk about rupture is that one of the things we find out after you've been through a rupture. I mean, for us, it's brain injury. It's there are a lot of other things that get swept up in rupture too. But one of the things that a lot of us find out is that systems that we just sort of thought would just be there for us when we needed them turn out not to be. And the rupture kind of reveals the system's failures. I mean, the first one for me that was obvious was when I applied for disability, right? Even though I've had a, I wouldn't say I've had a change of heart about that, but I've I originally thought this is a broken system because it it doesn't work. But then I was thinking about it more recently, and I think you and I talked about it a little bit, which was just if the system if you think the system's designed to help you, to support you when you're when you can't work because you're disabled, then it looks like a broken system. But if the design of the system isn't that, if it's designed to prevent what the system perceives as fraud, if you look at it from that point of view, the system works. But I looked around after mine and said, basically, wow, a lot of things that I just thought would work and be here are not. And so I ask every guest this question, and the you know, the answers vary. For some people, it's the healthcare system. It's very, very often it's insurance. That comes up a lot, a lot, a lot. Sometimes it's work, right? And the workplace that workplaces that just can't accommodate what people what people like you and I have been through and continue to go through. A lot of people, it's identity. What failed, what what did you see? What was the system that you saw failing?

SPEAKER_02

You touched on the identity, and that that was a big one for me. Because that was a hard pill to swallow. Because it took me years to get over to the fact that I'm not the same person I used to be. I wasn't a crier. I would laugh when my wife would cry at movies when someone would die. Because I'm going, they're they're acting. That that person's still very much alive, you know. And then I came from the old school where boys don't cry.

unknown

Yeah.

SPEAKER_00

I'm gonna write that one down too.

SPEAKER_02

They're very stubborn and they don't cry. Yeah. So after my brain injury, I was watching TV and something's hacking on, and I'm bawling my eyes out, and I'm like, what what's what's this wet stuff? Because tears were foreign to me, you know?

SPEAKER_01

Yeah.

SPEAKER_02

Yeah. And now I I'll cry at a coffee commercial. Because if it's sad enough, I'm like, this is not rub. I really the emotional dysregulation is real. Very real. I would have never if you would have told me that before my brain injury, I was I'd have been like, you're right. But it is.

SPEAKER_00

No, it's very real. It's I haven't had the speech language issues you have. I have felt it a lot with my emotions, which I always had under it's sounds like you. I'm obviously I'm not a guy, but I had my emotions under very tight control. Very, very tight control. And really nobody saw them. Now I react emotionally to everything, and I have learned not to trust. I can't make decisions while I'm feeling that emotion because I'll make decisions emotionally instead of rationally, and I'll be very unhappy with the result. So I'm still learning that like anger takes 24 hours, enthusiasm takes three days, but I have to wait until those things subside. Gotcha. So it's a version of the crying thing, but the emotional thing, do you have mood issues too? Because that's that's been something I've also done.

SPEAKER_02

My wife will tell you I do. I don't see it, but my wife will tell you. She says you're moody? Oh yeah. And you weren't before. No. She will tell you, if you asked her right now, she will tell you the first well, up up to the point that I had my head that that many years of our marriage, because we got married in 9-8, and my accident was right at the at the beginning of COVID. She saw me mad one time in that span of time. Right. Yeah. And now And now she's seen me mad several times.

SPEAKER_00

Yeah.

SPEAKER_02

Yeah. And she's like, that's not the robber that I know.

SPEAKER_00

No, because you it's what it's exactly what you said. You're a different person on the other side of this. And that's I it's hard for us to reckon with. I think it's very hard for the people around us, but just Yeah. For us to reckon with, we're not the same people as we were before, but we don't know who who we're becoming either. And we're just in this like vague place that I I just call it the after, but like you don't know who you are now. But you definitely know you're not the same person as you were before. Right. And that's hard. But I would say you also you had another system failure. That whole neurologist episode, that first one that is a massive system failure. That was massive, yes. And you stuck to it and made sure that you could get someone else. And I can't believe he gave you a hard time about about releasing you, but that's a failure too. Anyone who is, yeah.

SPEAKER_02

You know what else I've learned as well is the about the mourning your the loss of your who you were. If you're a married person, you're not the only one mourning that loss. Your spouse is as well. And people get about the caregivers.

SPEAKER_00

They truly do. They do. No, I yeah, I actually I feel that way with my husband too. And like the way your wife advocates for you, like everyone needs an ad not everyone has it, right? I mean, you and I have talked to lots of people in this weird community that we're part of who don't have that. And without it, like if you hadn't had her, I would you have gotten to the second neurologist?

SPEAKER_02

I probably wouldn't have thought of it. Yeah. I wouldn't have known to to advocate for myself. Yeah. I'd have thought, well, this is as good as it's gonna get.

SPEAKER_00

Right. Yeah. Right. And my husband does it too. Like he knows when I am when I'm at cognitive load, or I'm just at the point where because my my concussion pain is different than yours. It's not all day, every day. I'm in nine days out of ten, I wake up in the morning, I feel fine. It hits in the afternoon. This right now, where we what this time right now, this used to be the worst time of day for me. Two o'clock on was impossible for me. And I was right, I had just started a new job when I had my accent. So to have to say to my new my new team, I can't do any meetings after two o'clock. Like that's that's that's that's a little bit difficult. Over time, the the time has changed, time of day has changed, but the pain never changes. It's just you just live with this all the time. Do you deal with the uh barometric pressure? Yes. Yes. There's also something super weird. I'm gonna ask you this. I've I've I've asked people this, and and I nobody can explain this. My pain is at its worst when I'm home. If we go out or if we're traveling, it somehow my brain pushes the pain out until later. It's almost like my brain recognizes that I'm not in a safe place for it to do express itself or whatever it has to do. But when I'm home, it's clockwork. And I I've never talked to anybody about this who's also had this sort of similar thing where like your brain actually can help you if you're away. Like it sort of breaks the pattern. My neurologist can't explain it. Nobody can. You know what, and this is just Rob's opinion.

SPEAKER_02

Yeah, no, hey. But this is what I've I've just this to or I can't even get the word out. Don't worry about it. Take your time. But this is what I how I see it. When I'm distracted, I'm not thinking about the pain that I'm in. Because I think about when I was a kid and I hated shots. And then the doctor would have their assistant come in and and oh, well, that's a neat little uh shirt you got on. Who's that on the shirt? Oh, is that he, man? While they're talking to me, the doctor gives me the and I have no clue that they did that. But now, when I'm out in town, there's so many things going on that I'm not thinking about how bad my head's pounding. Yeah, yeah. Now, when I sit down at a table at a restaurant and we've got our order placed, and it's just me and my wife, and there's nothing going on, and I'm just sitting there, you know, being quiet, man, I feel it. But when those distractions are going on, I don't think about it.

SPEAKER_00

Yeah. No, I and that may be part of why I also have a different experience when I when I'm out of the out of home. You know, and people have said to me, Well, why don't you just travel all the time? I'm like, it it doesn't work that way because it does kick in, it just kicks in later, and then the next day is worse. Like, do you find that too is like do you find that there are days that are worse because of the things you things you did the day before, or does it not really matter? Because I don't find it correlates all that way.

SPEAKER_02

Yeah, yeah, yeah. If if I do a lot today, I'm gonna pay for it tomorrow. Yeah.

SPEAKER_00

Will you pay with it for with the speech or the the headache? Like what are you paying for? Like how are you worse?

SPEAKER_02

The speech will definitely be worse. The things that I do will be slower. Like I'll go to the kitchen, possibly, and want to make something to eat. And I'll be standing there, and my wife will say, Okay, let's let's talk it through. What were you doing? It's gonna make eggs. Did you get the eggs out of the refrigerator? That's what I wanted to do. And then she'll say, Okay, you need to get a trough or a bowl. A bowl. Thank you. Bowl. You need a bowl out and put your eggs in it. So she's walking me through the thinking process that I can do, but it's gonna take me forever to get there.

unknown

Right.

SPEAKER_02

And she'd probably like to eat today.

SPEAKER_00

I wanted to ask you because you you've you've been at this longer than me, and you've been doing this podcast, and so you've been talking to a lot of people. What do you wish people understood about this? I mean, we go back to this sort of like it's just a concussion thing. But like what do people get wrong? What do you wish people understood about about the just a concussion thing?

SPEAKER_02

It's just a concussion thing. I wish they I wish that could get cut off their tongues because they have finally admitted that a concussion is a brain injury. It is.

SPEAKER_00

It's a mild TBI.

SPEAKER_02

Yeah.

SPEAKER_00

But that's the other problem, though. The word mild is a giant problem.

SPEAKER_02

It is very giant because a brain injury is a brain injury. Part of your brain was damaged. There's nothing mild about that.

SPEAKER_00

No. And mild suggests that the symptoms that you're not going to have long-term symptoms and that they're not disabling. And the use of the word, I mean, I have a whole issue with uh all the language around this. I don't, I don't you know this and I know this. I brain fog doesn't mean anything. Cognitive low cognitive fatigue is a is a nice phrase, but it doesn't really tell anybody what we are experiencing. And I just find all the language around this, like it kind of flattens everything. Right. You know, you lose the meaning. It's very, very hard to describe what it's like for people like us on a day-to-day basis and going about a normal.

SPEAKER_02

Yeah, very true. And then too, I'm thinking about if I cut my thumb and it's just a little bitty cut, yeah, that's just a minor cut.

SPEAKER_00

Right. That's mild.

SPEAKER_02

Mild.

SPEAKER_00

Mild, exactly.

SPEAKER_02

And that's where people's minds go to. If I cut my arm my arm off, that's severe. That's a severe brain injury.

SPEAKER_00

Yeah, exactly.

SPEAKER_02

So people are taking what the medical field's doing for broken bones, broken legs, you know, and they're putting those those labels on it. Mild. It means nothing.

SPEAKER_00

Well, and you just hit on the other thing too, which is, you know, the very nature of a brain injury for most people is an invisible injury. I mean, yes, we know people who have actual scars and stuff, but for most of us, it's an invisible injury, right? And that's really, really hard for us, but it's also hard for the people around us because this is the trap, right? If you have an invisible injury and you act like you don't need help, you won't get any help. But if you act like you do need help, like nobody wants to hang with you, right? Because now you're like the brain-damaged person in the corner. Right. And it's you don't how are you supposed to how are you supposed to behave, right? Are you supposed to try to like pass as though you're totally fine when you're not? It's it's I think it's something that all of us struggle with all the time.

SPEAKER_02

Yeah. You know? This is something that I did take note of. And I wish I'd wrote about it in my book, but I didn't. Back before I had my brain injury in 2016, no, early 2017, I had to have a reconstructive surgery done on my left foot. Now that was major. That was a long road to recover. When I was on my scooter, people were going out of their ways to hold doors open for me. Can I take your groceries to the car for you? Can I do this for you? Because it was visible. I saw it.

SPEAKER_00

Yes, that's the difference. That's the difference.

SPEAKER_02

Walking to the door of the cane. Boy, they'll stand there wait, take your time, take your time. Uh I'm not I'm in a hurry. Take your time.

SPEAKER_00

Yeah. Yeah. This is they don't see it. Yeah. They don't if they don't see well, so in Best Guessn, you know, the country I invented for people like us, I have a ministry of visible proof, which is based on this exact idea that if people can't see it, they don't know, and this isn't just regular people, this is also the medical community. This is everybody, right? That we need somehow to provide documentation that we have this for people to believe us. You know, especially if we're relatively, and I would say for both of us, we're relatively high functioning given the injury, but this invisible injury piece of it is so hard. It makes it so my my mom says this all the time. She's like, well, if you just broke your leg. And the other thing is if you do have a a broken leg or reconstruct something, you know, reconstructed, there's a protocol. Everybody knows, like, you're gonna be, you know, I had I had major, I had rotator cuff repair last year, which do not recommend to anybody. But they tell you how long you'll be immobilized, what happens next. There's a there's a pro there's no protocol with this. Right. I mean, you're a guy saying wait two years and do nothing. I was lucky, I had I had a great neurologist, and she got me into a great rehab place and it helped with the deficits, but I reached a certain point where it was like, there's nothing to do anymore. There's no more rehab, treatments don't work. I mean, I I tried everything, you know, legal and and illegal, and nothing worked. And at a certain point, it's like you just have to stop. But there's no, there is no established protocol.

SPEAKER_01

Right.

SPEAKER_00

For for it I always thought of us, by the way, in like, because the data I had seen was that 10 to 30% of the people who who have a concussion will not recover in a few weeks. But I was talking to a nurse practitioner recently on her podcast, and she has a specialization in neurology and also has a TBI, and she said it's actually more like 50 to 60 percent. That sounds like people get concussions, which does sound that's a lot of us. And where's the research? Where are the clinical studies? Like, where's the science? I mean, it's football play. This happens to football players. Like, that was the other thing that was I I don't know if this surprised, then tell me if this surprised you as much as it surprised me. When I sort of came to and started looking for like treatments, I was like, football players get this, people in the military get this, like there must be a ton of stuff. And then it's like, no, there's it's and it's constantly disappointing to find out that there's still nothing.

SPEAKER_02

Right. And I really, and that number might even be higher than that, too. This is the problem. They send you home from the ER and they'll say, Oh, just rest a few days and go back to work. How many people do that? And then they don't realize because I've talked to people at stores and they'll find out that I have a brain injury, and they're like, Yeah, I have headaches all the day, all the time. And they just say it figure out what's wrong with me. I'm like, you probably have a brain injury. Yeah, well, I had a couple of concussions, but they said just go back to work, you're fine. No.

SPEAKER_00

A couple of concussions, just go back to work.

SPEAKER_02

Yeah, you're not fine. You've you've had a brain injury, and they didn't tell you.

SPEAKER_00

And unless you do the research, you're not going to find out yourself. But that is a massive, massive systems failure. The fact that there isn't enough awareness around what a concussion is and what a concussion can cause. In the absence of the awareness, everyone's kind of flying blind. And doctors are I mean, you saw two neurologists with two completely different sort of approaches to treating you. But it's hard to get to the other things like better screening, me medications, all of that stuff. Until you have awareness of how serious the just a concussion, this whole idea of I that's gonna be the theme of this episode, this whole idea of it's just a concussion because that minimizes it. And then it also makes people like us feel like we're nuts. I mean, that's the thing. When you're told your scans are clear, just go back to your regular, but you know that things are wrong and your brain isn't working the way it used to. Like you can feel that your brain, I mean, I feel like parts of my brain are frozen and other parts are compensating.

SPEAKER_02

You know, that's another thing that really irritates me when they'll say, Oh, your scans are fine. As a person that's going to look for medical help, when say someone tells me my scans are fine, I think I'm okay.

SPEAKER_00

I'm okay. That's what it that's what uh that's exactly what they're telling you, right? Your scans are fine, so you're okay. But you know you're not okay.

SPEAKER_02

And they don't tell you. They do not tell you that not all brain injuries will show up on scans. They leave that out.

SPEAKER_00

No, they don't. They leave that out. It's huge. And then, you know, a lot of the people that I talk to, and I've taught this too, you know, we we we have we feel guilty. We feel shame because we can't do the things we sh think we should be able to because the scans were clear and everything's fine. Right. And this to to sort of like take all of the symptoms that we all live with and then, you know, throw in a dash of guilt and like a cup full of shame. It's crazy. No wonder there's so I mean, the the the suicide. I looked this up recently. The suicide rate is much higher, not surprisingly, among people who've had brain injuries, the rate of depression, all of that stuff. And yet there's there are millions and millions and millions of us who are living with this and doing what we're doing now, which is trying to make sense of it on our own, because no, there isn't any organization who's doing this really, really well.

SPEAKER_01

Right.

SPEAKER_00

There are there, you know, there, there, you know, I was talking to someone the other day about how, you know, the stroke awareness campaign, it's been running forever, right? And it basically tells people like what are the symptoms of a stroke, because if you can catch it early, there are medications that can stop or even reverse any damage. We need a campaign like that. We need a can't we need a giant advertising campaign. And yes, my marketing background is showing. I can't, I can't help it, to let people know that you you need to be seen, you need to be evaluated. People think like I I didn't get much of a hit. I I why would I even go see a doctor? And then they develop symptoms later and have no idea that it's connected to this original injury because they never thought it was I'll tell you something that was really interesting.

SPEAKER_02

Yesterday, I I want to show you this book. I'm not I get no money from this, so just but I want to show you this.

SPEAKER_01

No, let's see.

SPEAKER_02

This book is a children's book. I interviewed the author yesterday and I pointed something out to him that he didn't even realize because he did this to help children, and I said, and I told him, and I think we discussed it on my podcast about the guy that came up to my book launch and he said, I don't have a brain injury, why do I need to know about it? And I said, I bet your house is not on fire right now. Of course not. I said, I bet you know what to do in case it does. Yeah. And I told him I and I told I pointed it out to him because this is an awesome book. If anybody any of your listeners have young kids, this is amazing. Because it's designed.

SPEAKER_00

Just for the people who are gonna hear this on audio only. Smarty and Friends. Smarty and Friends.

SPEAKER_02

It's by Brian Hamilton. And spoiler alert, he is actually a cousin of Alexander Hamilton. Yeah, we found that out after the fact. It was pretty cool. That's pretty cool. That's pretty cool. But anyway, the he did a lot of research on this and is like the dangers of food. How many kids are walking around while chewing a bunch of food that you know kids put way too much food in their mouth. Playground safety, riding a school bus, football, you know. And he and I tell him, I said, but you don't realize this is a great tool for not for not just kids. Right. Because the parent is reading this to their kid.

SPEAKER_00

Yeah.

SPEAKER_02

They're getting educated.

SPEAKER_00

Exactly.

SPEAKER_02

That's going to cause them to think as well.

SPEAKER_00

Well, and that's really important because I was talking to someone recently who was saying that people think that like kids are made out of rubber, right? If they get hit in the head, they'll be fine. But then they find that later on they're actually it causes longer-term problems. Like the knock-on effects can include learning disorders and you know, all kinds of different problems. And but people aren't necessarily connecting that to the concussion because they're like, oh, the kids will be we'll just we'll be fine. But I think this entire community needs we need better representation, we need better advocacy. There's a lot of work to do.

SPEAKER_02

Yeah. We have not even scratched the surface. No.

SPEAKER_00

No. But speaking of work, I have a job for you if you're willing to accept it. Sure. Because in Best Gesistan, in my my kingdom of Best Gesistan, it's governed by ministries. Okay. And it's ministries because ministries have autonomy. Departments are just subservient to the to HQ. So er so er anytime there's a problem to be solved, a ministry is born. So I have a ministry for you. I wonder see if you would be willing to take charge of it. I think you're kind of perfect for it. Okay. The Ministry of Lost and Found Words. That sounds like me. And we have a database, we have a goal thing. Yeah. Are you interested? Would you be willing to leave the ministry? Sure. The paperwork will be in the mail. It will make no sense. But the good news is in Best Guess Stan, there are no wrong answers, which is really handy for people like us because we make mistakes, right? Right. Exactly. So officially you are the Minister of Lost and Found Words. Welcome to Best Guess Stan. Thank you. It's an honor and a privilege. Excellent. I can't thank you enough for coming on the show, Rob. Absolutely. So great. And every conversation I have with someone who has a TBI, especially people who've been doing this longer than me, it just it expands my understanding of what a TBI looks like because there are so many symptoms and so many experiences. No two are alike. So I think it's really useful for our listeners and our viewers to like to hear and see all the different shapes. And let's let's get some better advocacy going. Like we've got a lot of work to do. And before we go, can you just let people know where they can w w tell them about the name of the podcast, where to find it, the name of your book, everything. Like where can people learn more about your work?

SPEAKER_02

Yeah, the podcast is called Life Rewired, the Branded Rebodcast. We're on YouTube and anywhere you can find podcasts. The book is called My Life Rewired. Why not? Right. And then the publisher did a great thing. She says, You need a website. And I said, I have no idea how to run a website. So she helped me build it, and I said, one condition, I said, I need a resources page.

SPEAKER_01

Yes.

SPEAKER_02

Because the one thing that I have found along my journey, here I'm what almost six years into this. I'm finding resources that I never knew were available to Brain Azure Survivors.

SPEAKER_01

Yeah.

SPEAKER_02

So anytime I come across something that is most of these things are free, yeah, I put them on my website so people can go have access to it while we create the will.

SPEAKER_00

That's great. That's great. That's that's really valuable.

SPEAKER_02

Yeah. Thank you so much. Through your website? My web my website, yeah.

SPEAKER_00

Great. And everybody listen to my life rewired podcast. It's great. Thank you. Thanks, Rob. Thanks for joining us for this week's edition of Rupture, the world of Best Guess Estat. Today's episode featured Rob Ball, and we talked about the idea that it's just a concussion. To hear more stories or to support our work, the single best way is to subscribe to our YouTube channel. Thanks for joining, and until next time.