5. Things People Say That Get Old and Tired Quickly After You Have a Stroke, Brain Injury, or Similar. Explained by an Actual Survivor

Good Morning Everybody!. My name is Will Schmierer. And welcome back to another episode of The Lovable Survivor Podcast. In today's episode, we're going to talk about some of the dumb things that people will say to you, once you have had a stroke or a similar brain injury, people really mean well, when things when disaster strikes, when things are going off the rails, it's not entirely their fault. In fact, it isn't their fault. I think most people genuinely want to say, and do helpful things when you first have a major medical life event. However, a lot of the times, what starts off is well intentioned. And actually, to their credit. They don't, you know, people don't know what they don't know. And unless you've been through this before, chances are myself included, I do this thought, I often say the wrong thing. It's not because I'm striving to say the wrong thing. That's not because I want to say the wrong thing. It's just that sometimes we want to be genuinely helpful. And sometimes it just comes out the wrong way, or it gets twisted, or, you know, it just wants to being unhelpful. So I think it is, this is kind of partly funny, partly serious, because it is something as a survivor, you either know, or are going through, sort of you going through a lot, first of all, you as the individual survivor are, kind of initially you're coming to grips with what's happened. processing things. You know, again, it's it's not that people are saying things that are to be mean or hurtful, sometimes it is hurtful. But generally speaking, there's kind of the, the good, the bad, the dominant, different is what I call it, it's, you hear a lot of things in the very early beginning. Some of it again, is, you know, when you hear from staff or medical professionals, or even people who have been through it, it can be sometimes it's just timing, sometimes it's just not the thing you want to hear at the time you want to hear it. And they don't think everything. Of course, everything doesn't sink in for everybody at the same time. Again, whether you're the survivor, or possibly the caretaker, even as a family member, you know, it takes some adjusting to realize what's happened to a loved one. You know, so there's that dynamic, they're processing it, you're processing it, if you want to help, they might not be ready for the help. It's very confusing. So as cliche as it sounds slow and steady, I think is the best approach in the beginning. I always joked with my family and, you know, staff at medical facilities, it's like, don't worry about saying the wrong thing. I don't even know what that is yet. But again, I'm I'm a little different than other people. And so some of the more cut, you know, I'm gonna go through the common, unhelpful statements and really try to kind of do my best way, my best explanation of here's why this might be unhelpful, here's why somebody might take it incorrectly. And then, you know, as a survivor, there's, there's an approach that I took, and it's that everybody was trying to be helpful. And I just kind of took what was said to me, and tried to apply it to my situation, my journey. And, again, I did this with the intention that people were saying things to me, that might be true. They may not be true at the time, they might be true later down the road, they they may take me six to 10 to 12 to 18 months to process. You know, and I didn't want to be dismissive of people trying to be polite and kind and nice. And also I don't want to make them feel like an asshole for saying something that could be wrong. Because again, they might be saying it with what works for somebody else, or what works for me may not work for somebody else, and vice versa. But some of the More comment on Garmin, or I'm sorry, some of the more common unhelpful statements. Generally speaking that I heard I do think are rooted in helpfulness. But I think it is also, time timing plays a role as you start to unfold your situation and really be able to assess things. You know, I think we all have have heard the things that whether it's stroke recovery or life in general, it's not really a prescriptive linear path and a lot of cases and that is no different with stroke. Before I get too deep in the weeds here, one thing I do want to say when it comes to stroke that I don't think a lot of people think about. And again, this is not just stroke specifically this is I think any brain injury really is very different. Then the typical broken bone torn ACL fracture of any kind. A brain injury is very different from those because a lot of times with a broken bone or or, you know, let's say, no one, there is no standard injury. But typically, if you're sick, it takes x amount of time to get well and you could expect in a month or less, you're probably going to be better. And you know, the same is true with a broken bone. 60 weeks may be a cast, you know if it's torn ACL MCL, maybe it's a year, depending on what level of of athletics or in your even just daily life, you know that that rehab is gonna look a little different person to person. But generally speaking, there is a timeframe. When you break your brain and have a brain injury, whether it's stroke. Whether it's TBI, whether it's concussion, whether it's some other events where you've had a neurological issue, the timeframe is a lot less certain and a lot less prescriptive. And what I mean by that is, you know, that kind of leads us into the phrase number one they hear more often than not as brain injury survivor is it takes time. That is probably the number one phrase I have heard over the years and I still hear to this day. And it is my least favorite it has it is completely unhelpful. However, over the last couple of years, I've realized people aren't wrong, when they say it takes time. However, going back to it again, that is not linear, it is not a path of certainty. It does take time, but nobody really explained to you how much time what that means because because, okay, you know, I think when you break that down when people say it takes time, you sort of expect you have this we often have this broken bone mentality, right? 60 weeks, I'll be good to go. Rock and roll and you put the casts on you take the cast off and 60 weeks give or take depending on the severity. You do a little physical therapy for that finger, thumb arm leg, you know, but a brain injury is like a if you know sports and know the story of Alex Smith and his broken leg that got infected and multiple surgeries that is more in line with what a stroke is, it is the worst case scenario. And so it does definitely take time. One of the things I wish people said early on when they said it takes time that they clarified what that actually means and what that actually means is every you know, this is another thing you hear every buddy is it depends on the person. Cool. That is also true. That is a factual statement. So I guess my advice when you hear it takes time is you know, obviously it's not super helpful. It's not super specific. So I just kind of over the last couple years is like okay, it takes time. To me in my mind. Anything I'm working on, could be infinity could take forever, may never happen. And anything short of at this point anything short of I At the end of life, for me would be a win. So I tried to use that it just take pressure off myself, because I, like many survivors have experienced different things. I think sometimes. Sometimes things just kind of you get into a flow and you get into a rhythm and things start rocking and rolling, and you think, oh shit, I'm in good shape, this is really working. But then other times, it can be the next day. And nothing could be going your way, you know, if you're in a unique position, but I think like many stroke survivors, there are good days and bad days. And sometimes, one day you wake up, it's a step back, one day you wake up, it's two steps forward. It can just take a while. And I think and again, just to remind everybody, sometimes I have a hard time putting a real, like definitive yes or no on certain things is because I had a stroke in December of 2019 at the age of 37. went to rehab January of 2020. And then came out of rehab thought it was to be at home doing some home health care, some inpatient or outpatient therapy. I got diagnosed with MS. That February of 2020, I felt I was having a second stroke. So I went from being paralyzed on the right side of my body to getting home and working through that set of issues and then immediately because that NSX exacerbation and subsequent diagnosis of having Ms. I was partially paralyzed on the left side so I was like a big hot mess like I still to this day three plus years don't know what necessarily is affecting the other thing like is it a stroke deficit is the weakness from an S is is a combination is slapped over? Was this an issue before like it is very kind of screwy? So going back to you know, the things that people say that are very unhelpful. Um, another one of my favorites is Joe Aki wasn't worse. I don't know how for me, it could have been worse. And I'm sure a lot of survivors feel this way. You hear this a lot. I just tried to brush it off. I. Yeah, I mean, I wish that one I tried to just be. Yeah, every time I hear these things that I just do a heart I roll but when I hear it, it does remind me that it could in fact be worse. You know, one in 5141415, loser life and a stroke, you know, TBI, concussions, other brain injuries? It depends. I know, that's very helpful. You know, so when people say you're lucky, it wasn't worse. I really hate that. I think it's awful to say to people, however, I do try to see the silver lining these days. And I think it's helpful to just realize, yeah, I've got a second chance. And that is a big thing I'm an advocate for is trying to make the most of the second chance. I like to surround myself with other people who are ambitious. You know, I do you often make mention of my deficits to people just surveyed only expect certain things so that they're aware, hey, I used to be amazingly fast at these things. I'm a little slower. It takes me a little more time now. It's not an excuse, it'll get done. I just need an extra second. You know, and I'm okay with that. I'm now on 43 kids and a wife. Like, I'm good with that. That's that's fine. So, you know, yes, we're lucky. It's not worse, we're lucky to be alive. I do think that is a big takeaway is trying to make the most of that sort of second chance and opportunity. And I remind myself that all the time, because our days when I'm feeling down, you know, and I that's okay to, to be a little down to have an off day, give yourself a break, you've survived the stroke. Do not be needlessly hard on yourself, but also do push yourself when you think maybe because I fell into that trap a little bit too. Sometimes I would not push myself as hard and I just had to have an honest conversation with myself. Is this a bad day? Or am I feeling a little more glum about things than I should? In my case, and shoulds the word I don't love but you know, so Sometimes you do have to ask yourself, Am I okay? Can I push myself a little more? Or have I pushed to exhaustion. And so that is something to be mindful of. Another thing that people say that I really love is that I'm too young to have a stroke. Again, I had my stroke at age 37, there are, every average age is 65. But there are certainly people younger than 37, that who had strokes. Definitely 40s and 50s. You know, I would say teens and 20s, is fairly uncommon, but you see it a lot on just, you know, weird events, not very different from mine. Of course, I tried to take a lot of ownership and tell people sort of my history and my story, because I think I was doing myself no favors. But that being said, I don't think anybody's expecting to have a stroke at any age. And so, you know, unhelpful as it is, again, I just try to appreciate when people are, you know, that that means a hairdryer or like, You're too young to have a stroke, like, you know, thanks. But that said, That's not helping me solve any problem, or really, anybody solve any problem. But it's also very similar to the one might I, you know, there's one, I hit it forever. It's, oh, you don't look like you've had a stroke. That is not a great thing to say to somebody who is a stroke survivor. Oh, however, again, with time, I've learned to appreciate that because means to me that I'm putting in the work to at least feel a sense of normalcy, which I think is something a lot of survivors crave. I don't know if that's 100% True. But I know from my small groups and people I talk to, fairly regularly in the in the community, you know, they they kind of feel they start to, you know, they it takes a mindset shift to take some time to get used to that. But eventually, it's, you appreciate that, because it means you're putting in the work. It does, it does, it doesn't take away from the fact that days are hard. And things that were easy, are now difficult or take more time. I am not trying to be dismissive of any of that. And I don't think that people that are saying, you look great, you know, or you don't look like you've had a stroke or trying to dismiss the work that an effort that goes into it, it's just, I do try to take that one as a, it's a personal sign that I'm doing the things that I want to do to get better than I'm continuing to get better and that I you know, my my my speed of things, my desire to be whatever I was before listing bed never returned, we're three plus years into this now and that's okay. For me, I'm okay with certain things. But there are certain things I still want to get better at. And so I'm working on them. So I just take that particular unhelpful statement and just really turn it to my favor. And again, the similar one is like, you know, you're young, you're fit, which I was not, when I first sent my stroke fit. Now, I thought I'm far from David Goggins, I am definitely on a path that was more in line with where I wish I had stayed since college. So I would say I got way off the rails in my 30s. But now I'm back on track. And I don't know if I ever want to be a shirtless runner or a six pack runner, but you know, I just I can appreciate the all the work I'm putting into my body now. And I'm not destroying it by drinking or smoking. So yeah, there is some motivation to keep looking good. Or trying to keep getting better. That's something I've ever been accustomed to being alignment sighs but, you know, I don't know. My wife does. It's very motivating. She's into fitness, different things than I'm into. But I think we're in our 40s and we're looking to stay in good shape and good health. And yeah, this stroke has been a real wake up for all of us. And sure, we want to model it for our children. Because we want them to be active and you know, I think I think any survivor out there will agree with me, this is not something that is easy to recover from and I wouldn't wish it upon my worst enemies. You know, so I will say on that front. This is sort of unhelpful, but I do think one of the goals is that in this podcast and in general is to help educate people because I don't think, no, that's not true. I think a lot of people could serve our survivors stroke, I think people are, I just don't want people to have to learn the hard way on. Because it is a huge commitment. It's been a financial commitment, it has been a time commitment is my wife has been instrumental, my kids have been amazingly helpful. So, you know, for as badly as this could have worked out, it's worked out really well, and a lot of other ways. And so I'm very appreciative of that. And I think that is a big, big thing that I take away when it comes to getting better, you know, and it's yet like I said, the theme here is sort of these unhelpful things people say to you, and how do you react? But I think, to that point, it's, you know, there are things that you learn along the way that you don't necessarily see in the beginning, like when people were just saying, it takes time, it takes time, I used to get so pissed, because I'm like, how much time I want to put in this work, like, you know, and I think that's another big thing. No, I don't think I said this already. But you know, with these unhelpful statements that people say, I think there are alternative ways of thinking, and it's like, you know, acknowledging Yeah, like, there, there is a significant severity to having a stroke, and there are long term effects. And so if you do get that second chance, you know, take advantage as the survivor, if you're not the individuals survivor, again, these statements, you know, instead of saying these blanket statements that are sort of unhelpful, what what are the things that you could do as a supporter is offer support and encouragement? You know, can I help you, you know, get to an appointment? How are you feeling, you know, taught very often survivors. I don't know if they'll tell you, but I will tell you like, it's very lonely sometimes. And I have a huge support system. Well, sorry, I have a great sports. Some I would say it's not huge, but it is very organized, I'm probably because I'm a little obsessive about it. But yeah, the team and the family that I have placed. I've worked closely with all my family members, from my own children, to my wife, to my sisters, to my brother in law, like they've been amazing. Every step of the way. And yeah, we've all made mistakes. And in some cases, it's actually led to pretty big disagreements. But on top of that, they've been super supportive. And we have gotten to a place where everybody's been helpful. Feels helpful isn't saying he sounds super dumb, which I think I think I can speak for my whole family. Every person, every buddy connected me. I'm the king of saying stupid shit. So I think nobody is worried about saying the wrong thing. When it comes to me, the stroke and the situation so and everybody is fine with me taking the blame, and I'm even fine with taking the blame when it comes to saying unhelpful things. But yeah, they've all recognized that difficulty. They've been supportive. They've spoken to me when I felt down or alone, or you know, listen to me babble on about how frustrating it could be. Because I think sometimes people forget one of the most frustrating things about a stroke besides unhelpful statements, which again, generally people don't mean to be unhelpful, they just are unhelpful. I always struggle with trying to educate and help people understand that this is really a lot more difficult than they then they understand they want to understand and I don't even know if I'm doing that great of a job communicating it but it's it is incredibly difficult to overcome this you know, this kind of event and I think in my case, why I always say I had a stroke and followed up with the MS is because sadly, that is exactly what happened, but further further illustrate the point. The stroke was like getting hit with a baseball bat. Right. getting knocked down to the ground. You're starting to get back up. And then two months later I got diagnosed with MS and have that exacerbation. That's like getting getting hit with a baseball bat. getting knocked down starting to get up, and then just get a hit with a baseball bat again, it is incredibly difficult and I don't talk about this a lot because it is hard to admit. I mean, I was just about knocked the fuck out. To be perfectly blunt, like, not a lot of things take me out. But this almost totally crushed me. And I'm really glad I thought about this a ton today for some reason, because I think I knew I was recording. And so today on today's run over so get out of this, like, I don't understand I've said it before. And it sounds a little arrogance. But please bear with me. I don't think a lot of people could handle this, like, this is insane when you think about it to get hit, knocked down, knocked down again. Like I mean, I was knocked down hanging on for dear life the first time, then I get hit again. And hanging on by a thread. Now I can look back. And it's kind of funny, but it is. I mean, I've done some incorrect things in my life. But I'll be honest, like, I made a couple of dumb mistakes. Sure as a kid, but I can't I was thinking about it. I was like, hell did I do to deserve you know, the stroke, I think in a way saved my life. But what did I do to to anybody at any point in my life, like, I've only wanted to help people, and I've only wanted the best for people. So it was really, it's making me emotional thinks about it. It's like, you know, this, I mean, honestly, I fight hard every day, because I am not ready to give up. Of course, I'm not ready to give out like I got a family to support. There's that, you know, I got three kids and a beautiful wife who's amazing, I got two sisters who I love. My parents are gone. But I still want to continue the legacy on their behalf. Um, you know, and I think that's kind of circling back and wrapping this up, though. I'm sorry, for getting emotional, it just, you know, I just keep thinking about it. And I'm like, oh, it's kind of really hitting me. And I'm recognizing all the work that I put in and you're this shit, it takes time. And you know, it sucks. Sucks. It's time to hear that it takes time. After a couple of years. And looking back, you can see that hard work pay off. And it's still annoying because it's not linear. There's nothing clear about any part of the rehab process. Because I put in 1000s of hours typing and my typing is so garbage in my left hand so wanders all over the place, which is super annoying, because okay, I was right handed, I had a left brain stroke, so it affected the right side of my body. Why is my left hand wandering off the keyboard? The left side should be pretty much stable. The right side is pretty much stable. There's just some like some still some lingering issues. So you know, it's okay. I'm not complaining, again, because you know, because it does take time. And I now recognize that it takes time. It takes a lot of fucking time. And I think the hardest thing I wish when people said it takes time is that they were really more clear like, this is going to be a really tough road. And I'll be honest, I didn't want to hear that in the beginning. But one doctor told me it. And I actually didn't like the attacker and now I respect the hell out of that doctor because he gave it to me. The way I needed it, he didn't sugarcoat it. I sure wish she was a little more specific in terms of the details. But yeah, it takes a while and it may take me the rest of my life. So recapping, yeah, I think people say on helpful things, but I do think they have good intentions and takeaways, you know, it takes time you're gonna hear over and over and over. and over again, just like you've heard on this podcast. You know, I think anything short of infinity is a win. That's my take, you know, you may have a different take, but I think you have TEDx, whatever you think the amount of time will take, because I think anything less than 10 axing the amount of time you'll shortchange yourself, and you're ended up being disappointed. Maybe the approach really should be looking back, maybe I should have had this approach was like, here, I'm on the block by I mean, I think I did kind of like on the bottom right. And I'm just going to keep trying to raise the floor. Rather than having a bar set super high that I can never get to, I'm just gonna raise the floor, that's a very small mindset, my mind set shift. However, if you keep raising the floor, you'll get hired to the bar without falling. Versus if you just tried to jump to the bar, you may fall. You know, and these other things, I think, talking with other survivors, again, bringing it back to, to why I'm starting a community of survivors is because I'm three years and I still need help. I wish I had other help from fellow survivors. I think hearing other people's stories is super helpful. It's super helpful when you're in a rehab facility in the early days, but those people are what are they a couple of weeks at most at? Yeah, so you're not getting to meet and talk to people that have been three, four years ahead of you in the journey, and I think that's a little more helpful. So that's, that's the precipice about creating survivor sciences. You know, it's really a community of folks who want to thrive who really want to rebuild and rebuild their life and really take advantage full advantage of that second chance, maybe it's, maybe it's a third chance, fourth chance, I don't know, it doesn't matter our chances. It's just people that are interested in continually getting better and keep doing the work. And, you know, there's a lot more to and we'll talk more about it on future episodes, but that's sort of the main idea behind the community is finding other folks who are really interested in doing the work, maybe Maybe you've tried different things, sharing what you've learned along the way. You know, and I think that that community will be great for listeners of this podcast, but also just finding and connecting with other people who are maybe doing similar things to you. Kind of like LinkedIn, kind of like networking, kind of like Twitter, but just just different. Yeah, and the cool thing I think about a community, especially being recreated over community is that you know, your own personal six foot eight 325 pound bodyguard, which not everybody could say, and not everybody could say they have a six foot eight 325 pound survivor, friend, who's also survivor himself. You know, I got three kids and wife and I've had a stroke, and I have MS. And I just turned 40. And I don't know, I'm excited about an OPR, too. And yeah, I think I think we'll kind of leave it there. But um, in closing, I just want to say, you know, I never I do get mad sometimes, but I just try to respect people that are, maybe they're not as knowledgeable about stroke. And they do say things with the best of intentions. So if you're not a stroke survivor, or you said these things, don't, don't beat yourself up, don't beat up other people. Just know that sometimes. Even though it's well intentioned, and it's even, it's, it's well received. It can be unhelpful, and just to be aware, I think it's like anything else in life, you know, we say things we maybe say the incorrect thing we learned from it, and we try to grow and get better. And again, I never fault anybody for saying, quote, unquote, wrong thing. I you know, I do it all the time. So I think when when, as long as I could tell people are genuinely being encouraging and supportive and trying to uplift and you know, I have no judgment, it's, it's just for the individual survivors I do. I do recommend trying to kind of flip the script and get away from that negative thought that it may or may may trigger negative thought, It's okay, let you know, have that and process it and then, you know, reset and then talk to, you know, if you need to talk to a particular person, talk to him. Again, I think it goes back to making the most of that second chance. So, anyways, we'll leave it there for this episode, and see you next time. Bye. For now. Maluma No