2. The Early days and Managing the Initial Wave of Overwhelm

My name is Will Schmierer and welcome back to another episode of The Lovable Survivor Podcast. Today is January 31 2023. And I said I wasn't going to set the date on these episodes, but I already did. Heartbreak old habits. I will record some of these ahead of time at times. But that is, yeah, we'll leave it there. So this is episode two of the podcast. And today I want to talk about what it feels like and the early overwhelm of having a stroke of having a major medical event, major life event and how to sort of navigate the early days. Granted, I had to go back and kind of think things through a couple notes, because we are three years into this journey. In fact, where we're two tries into this podcast, because because my computer decided to shut down the middle of the recording last time, so starting this one back from scratch, but um, yeah, stroke, the early days, the early overwhelm, how to navigate that how to sort of parse all the information that's getting thrown your way, especially in the early days, because honestly, it takes a beat, to realize what's happening, what's going on, and just how different things are really going to be. And I want to give you the honest truth, at least in my experience, I think, you know, when I think back to the initial days of my stroke, once we all serve, realize what had happened and that it had happened, and that, you know, it wasn't possible to reverse anything at that point. I think the doctors and medical professionals around me made really, they were super helpful with my family, with me. And, you know, I, I think I did get a little preferential treatment, if I'm being honest, because I was 37. You know, I might have been a little bit of saving their arm, but because I did have the stroke in the hospital. But that's, again, that's not their fault on, it would have been nice if we caught it. But there were a lot of things outside of their control as well. And I'm not naive, I'm not, you know, I realize everybody's working. You know, this is pre COVID. But it was the holidays. And there were no indications initially that I was going to have this stroke, because I certainly put me on medication initially to kind of handle the AFib to reduce my blood pressure. Just a ton of things. They did everything they could, you know, and again, I don't blame them for for not catching the stroke, I would have I, you know, my wife kind of caught it. But whatever it's it kind of is what it is. And although I do have, you know, I sometimes can't stop myself from wondering, whatever, for all sorts of things. But the truth is, once I realized I had the stroke, and I immediately went to work on how do how do I fix us? You know, I've been a fixer my whole life. That that's a heavenly trait, I think. And I knew I was I was lucky to be alive. I think, you know, I didn't learn it right away. But pretty quickly, I realized I was very lucky to be alive. One in four, one in five people do not survive a stroke at any age. And it is more common in those that are 65 and older to have a stroke. So there's not a ton of information for younger stroke patients. It's a lot of I don't want to say hearsay, but it's a lot of what other people have witnessed. Some of it's documented. Some of it's not it's not super important. There's just not a ton of information for let's just say probably 50 and under. I do think there are there's a couple of camps. You know, I think if you're fortunate enough to get to 65 You might feel differently about your recovery and your journey. Maybe not. Because I've certainly met plenty of elderly people who had a stroke who were just as ambitious as I was to get back to some semblance of regular life. You know, but I will say for me at 37, I was like, Well, you know, I remember I told one of the early neurologists that begin two or three days and, you know, I'm barely good two or three years into this. I'm just now at the little over the three year mark, realizing that I can kind of help other people who might be earlier on who might be younger, or young, like myself, trying to figure it out, who might also be raising children. You know, and it's very overwhelming. When I think back to the early days, you know, I was when say, while I definitely was ambitious, two or three days to recover from a stroke is very unrealistic. I don't care who you are on. Yeah, I know, I'm not sure anybody could do that. But again, different strokes, every one of the annoying things about stroke. And when you find yourself in the hospital, and whether that's a rehab hospital or the regular hospital, there are a lot of people trying to be encouraging, rightfully so it's good to keep positive attitude, but not in the sense you don't want to get to know you can do whatever you want. But I didn't want to looking back, there was a little bit of too much positivity. I'm more of a shoo me kind of give it to me straight. Yeah. And I think to be honest, that same doctor that I told I would get two or three days, I mean, he kind of laughed, and I think, obviously now I know why. But it's not only is it unrealistic. You know, I didn't want to hear it that first couple of days, but he was right, it's gonna take a lot of work. And it is taking a lot of work. And we're three years in, it still takes a lot of work on a weekly and daily basis. Three years in, I still remember how things were right up until I was in the hospital, and how much more effort or not more necessarily, but it's different. There are lots of things that used to be mindless, you know, whether it was walking up the stairs or doing certain things or tying my shoes, for example. You know, and that's, I think that's why I want to do this, this, I'm sure we're gonna touch on that millions of times throughout the years. For as long as this podcast goes. Really, you know, today's episode is about the early overwhelm, because there are lots of doctors, lots of professionals, a family. Lots of friends, lots of co workers, lots of people telling you lots of things and some is great, some is helpful, some is not as helpful. I'm not saying you should ignore anybody, but you really I think if I could go back, I mean, I think I did a pretty good job, I was good at a couple of things. I was good at listening to doctors, that's because I knew a had messed up and had not been going to doctors enough prior to being admitted to the hospitals for stroke. So I knew that they knew more than me that I needed to listen to them to become stable. Um you know, and we could talk about kind of those things to how you progress. Again, I'm not a doctor, but I'm just for me, I knew I needed to listen to what they had to say to begin the road to recovery, um, you know, so I took my certifications I didn't really fight people on things I you know, I just kept my ears open, I listened to everybody and everything. Some of which like I said was good, some is frustrating, some is helpful later on. You know, there's a lot of things I think some of the more significant things that you hear continuously are every stroke is different. That is very true, but also a real pain to hear in the beginning. But I think they say it because they don't know you and your body. You may not be well acquainted with you and your body yet. My guess is if you were you probably would have found yourself in a different situation. But again, that's exactly why they say it because there are people who have a stroke for maybe they were in a car accident. I'm not something that they control. You know my case that was not the case. I just was a really A sheep overweight stressed out former developer father of three with a wife whose death, you know, parents had passed away the year before my stroke. So there was no shortage of things going on. And so that is important to touch on because every stroke is different, but there are certainly enough similarities. And you know, you hear a lot of blanket statements, and you hear that life two years on social media, you see it with other people. You know, you got to, sort of, you don't have to do anything like, you don't want to but my tip, my, my best advice is listen to everything everybody's saying, you know, and sort of absorb that and then determine how things will be helpful for you going forward. No, but I do think concentrating on getting yourself right, initially is going to be your best bet. Because, you know, whether you're a father or a mother or a parent, or a sibling, or brother or sister, whatever your role is in life, you know, without you getting to a stable and healthy place, all the other work doesn't even matter. Because, you know, you just kind of you need to you need to do that before you can start take care of others again. You know, I think one of the one of the big things for me early on was asking for help, I didn't really have a choice. Being that I was paralyzed on the entire right side of my body. It was both embarrassing at times, and humbling. You know, I joke about it a lot, but you really haven't lived as a as a grown ass adult until one day you're walking in the next day. You can't walk Yeah, you can barely talk. Um, you know, I'll just come out and say, it is humbling when you realize you can't even get out of the hospital bed and you had to basically crap in a pan. Um, you know, and yeah, one of the other things was once I finally kind of move around, and least get them in a wheelchair, then there were things like I was so big at that point that they had to get, I think it's called the horror, I can't remember exactly, but I'm pretty sure. Which is basically like a mechanical crane for nurses because I was so big that nurses, even male nurses, pretty, I was bigger than everybody at the hospital staff and probably most of the entire if you combined all the nurses, and nursing staff and medical professionals on any given floor at any time, they probably didn't add up to my weight, you know, as 500 pounds at the time, my stroke so, um, you know, for a little while there to get me out of bed and into my wheelchair, they had harnesses and straps and yeah, basically a giant fucking crane for for lifting me out of bed and putting me in a wheelchair. And that was enough motivation for me to really figure out the road to recovery and navigating both the physical and mental challenges that come along with it and how was I going to rebuild my life? And again, it's, it's overwhelming in the beginning cuz you kind of don't know where to start. I mean, I knew, Okay, let's change the diet, that's good that the hospital sort of takes care of that they don't let you deviate too much. And I was not interested in messing with that. You know, so I pretty much followed what they let me have and I was fine with that. I let them have all the control. I never argued with them. You know, I'm not big in. I'm not a rule guy. But I've certainly learned to follow rules a bit better the last couple of years and for me. And again, this may not be everybody but I never argued with staff. Although there was one, one little thing, but it wasn't until my second stint in after the MS diagnosis. But I'm always appreciative of nurses and medical professionals and staff and doctors for their time when I was seeing them regularly in the hospital. Physical Therapists speech therapists always thank you, thank you. Thank you. I loved making them laugh. I think that was super important. And again, I said this earlier, but of course I lost the recording but uh, You know, you will hear me make jokes sometimes and gotta be funny. And it's not to make light of the situation, it's just, that's my way of, you know, you've been dealt this hand, whether you created that situation or just kind of happened. Either way, it's overwhelming. It can be emotional at times, it can be difficult, you have good days and bad days. So for me, whether it's finding something funny with something, I'm doing that stupid, or you know, I've just kind of tried to make fun of myself, I was always kind of upbeat at rehab hospital. It's a lot of goddam work. And it's really, like I said, it's sobering. It's It's humbling, you know. Again, one of the other things, when you have these neurological, neurological events, especially, I don't think it's any easier or worse, I'm not saying a stroke is better or worse than cancer or heart attack, I think it's just different. And, of course, like every other thing, it just depends. But also, with stroke, which I think a lot of people sometimes don't realize this how I'm only saying this, from my experience of people that I've known that have had heart attacks, it's very sort of focused on the heart. Obviously, it's critical, because if your heart's not pumping blood, there's a good chance you're not alive. So it's, it's not to be funny there. But the majority of heart attack survivors and cancer survivors do not find themselves. Typically as debilitated physically, as you might from a stroke. Like I said, I was paralyzed on the entire right side of my body, from the stroke, obviously, not permanently paralyzed, maybe permanently, a little off, but that's TBD. But I'm definitely making a lot of progress. I'm definitely walking, running now. But it is a long ass journey to go from, you know, wheelchair to a walker to kind of figuring out how to walk, it's been really awkward, I have a couple other medical devices, you know, and then for me, if they're on the MS, it's it's balance. It's a lot to handle. So yeah, it can, it can definitely be overwhelming and can feel kind of, it's actually hard to because it's lopsided to try to organize what feels very disorganized, or every time you do organize things. Something comes along and throws you a little off track. And I was saying earlier, too, that one of the most difficult things I think, for me, as a former athlete, and I think a lot of people will find difficulties with this and probably have if you're further along in your journey is that with with a neurological event, there's no guarantee that you're going to like a lot of times in life, if you put in a certain amount of work, you kind of get back a certain amount of results on you know, I guess let's take typing. For example, if you practice 10,000 hours typing, like, eventually, you're going to get faster. Same thing with running you you increase, you know, the amount of running, there are certain formulas and things you try and test out, you know, you do speed work, you could you get to pick up speed and you and you probably do, right, a lot of times he put in the work, you get that in return. With a stroke, it's a little different. There's no direct correlation, and that's because it is a brain injury. So you know, there are things like, chat GPT that we're using AI technology for. Fantastic, cool tool, but you know, there are plenty of things like neurological events, how do stroke survivors get to a place of feeling like themselves again, you know, and that's kind of the premise of this podcast is using science and sharing those struggles and some of the successes that I've had. Again, these are all things I've talked about, and we'll talk about more in depth as we go further in the episodes. But yeah, there's just a lot. A lot of things and for me, it took a couple of years of it's not that I didn't think I could help people initially. I was trying to figure out my own path and you I get on my own recovery. And it wasn't really until last year where I was like, okay, I'm good. But I can be better. And that's when I realized I was like, okay, good enough is good. Like that get I was, I was definitely stable. You know, in the early days, I think you want to get to a level of stability, you want to be listening to your doctors, I am not a doctor. But I certainly suggest listening to doctors, because they are there to get you stable. And at least figure out an initial early path to the next steps. Where it gets trickier is when you're a couple years into it. And it's you know, you may not be seeing, you know, I still do try to do physical therapy and occupational therapy yearly. I did not do as much last year, but I took it a little bit into my own hands last year where I decided to get into peloton. And I've been working out for a while, but I just decided to get with the trainer and just see how I can level up on my own. And I have nothing but great things to say about all the therapists that I've worked with in the Brooks network here in Jacksonville, Florida. Whether that was inpatient or outpatient. You know, a lot of the therapies are great. And I'm not saying I'm different than anybody else, I just wanted to try and see if there are some other things that I could do, because I am now 40 years old, still 15 Now, yeah, 25, right. 65 minus 40 is 2525 years younger than the average stroke survivor. So I wanted to see if I could start to do things differently I have, there are lots of things from breathing to other holistic things, you know, I'm not anti pill by any stretch of the imagination, it's just, I would love to be off blood thinners. That is something I've been actively working towards probably for the last two years. And we're almost at that point. However, for me, I'm not in a huge rush to get off of them. Because let's be honest, I'm putting a lot of work into my recovery, we're three plus years in, the one thing I don't want to do is go through this process a second time when I could avoid it, you know, there are no guarantees in life, I could certainly be in a car accident and have a random thing. You know, Stroke can happen to anybody at any time. So I don't take that for granted. But, you know, DARS, I certainly don't want who have made all these lifestyle changes that I've made and in dealing with, you know, what I call the early overwhelm. To go back and do it again, for lots of reasons. But mostly because I don't want to do it physically. Again, I don't want to deal with all the medical bills and medical. You know, I'm an elder millennial, I don't mind being on the phone, but it's not my preference. And I probably have spent 1000s of hours on the phone with various billing companies. At least here in the States. It's still I had pretty good insurance, and they were great. I have new insurances here. They're also great, but it still is a process and sometimes bills come in out of left field and it's just like, Okay, I don't mind paying this, but like, where am I paying it to? Why am I paying it? Where's it coming from? And that all goes back to being able to ask for help. And dealing with that over early overwhelm, you kind of don't know where to go, but I think you got to get yourself right. Medically physically, dietary? No, I don't, you know, everybody's gonna have a different path. And things like it takes time is true. I think one of the other things people do say a lot of positive things, and maybe it gets almost to the point of toxic positivity. I don't think that it is on purpose, necessarily, but I do think you do hear these stories of medical miracles, especially with stroke where somebody wakes up one day and they're totally fine, or they've had a huge significant bump in their recovery process randomly. What I could say but yeah, I would say, you know, obviously, you can have one of those major life events and something could happen where Everything is good one day, but I think you would take that with a grain of salt, I think the expectation is that it is going to be a long journey. And you're going to have to put in the work and there is no timetable for how much work or how much time it will take to turn things around and get on the right track. And if you do happen to be one of those people who are fortunate enough to wake up one day and be fully recovered at some aspect, that is a win, you should take that and be thrilled about it. But that does not mean everything will be good. And do not take that for granted, I would say and I would say what, you know, back to that toxic positivity, it's great to keep a positive attitude. You know, I love that I had that attitude early on, that I'd be good in two or three days looking back. That's absolutely ridiculous. Go good mindset. But I'm not realistic. And I think sometimes, at least for me, I need that dose of realistic expectations on you know, and again, I didn't want to hear it early on from that neurologist. But he was right, it's gonna take a long time if it were two or three years in, and there's still work to be done in there. So things I can do to improve. And there's no real clear indication that the roads in recovery will ever really end. Or that it will ever get back to where I was prior to the stroke. But I'm certainly going to try. And I've rebuilt a lot of my life and reorganize my life in a way that works for me. Which I think is another thing that people don't really tell you about is that, yes, the medical professionals, especially in the early days will help you the family will help you early on. Part of getting yourself right mentally and physically and taking advantage of every opportunity you can is that eventually you're gonna go home, eventually, you're going to be on your own. And it's tricky, you know, and it's sometimes you think, Okay, I'm gonna just kind of take this shortcut here, like a lot of things in life. And it can be super frustrating. I think the hardest part is like, for me, I struggle to have survivor who's pretty young, 25 years younger than the average stroke survivor. You know, you're like, well, I should be able to do this. And yes, I should. But also, if I don't do it the right way. We'll end up paying for it later. And what I mean by that is, sometimes when you have paralysis on one side of your body or something similar to this, you know, I might use the other side to overcompensate. So I do think faster. But in reality, I need to take a deep breath, and relax. And remember, if I just keep practicing doing it correctly, I won't have to then correct the Overcompensation later on, if that makes sense. For example, you know, I had trouble using fork a knife, the first couple of years, you know, and initially I use my hands to eat because I was hungry, right. But eventually I just put in some time and effort. And holding a fork correctly. holding a knife correctly can be terribly frustrating at times, and you want to throw things out the window. But I learned you know, if I do it, right, and I practice it slowly and correctly. Longterm it'll pay off. And I think that's kind of one of the biggest things about the early overwhelm is that if you're like me, you want to just get to better or whatever better is for you. And it's not that you're going out of your way to take shortcuts, but you are kind of sometimes overcompensating or trying to figure out ways to do things differently with your body that you maybe weren't expecting. You know, so there are lots of things in the early days that can be overwhelming. And I think, honestly, you know, this is going to be a topic throughout the podcasts. Because again, we're three years a little over three years into this now and I'm still at times I feel overwhelmed. It's different. Because I'm a little further along now, but it's it's it doesn't go away. It's almost like impostor syndrome, but it's um, yes, survivor almost overwhelming. I don't even know if that's the thing, but that's kind of what I'm thinking. And yeah, I think the last thing I'll say is again, don't don't be afraid to ask for help. Take advantage of all the help you can get, especially in the early days because eventually you will be kind of on your own even if you have family and friends and supportive group around you. You know whether you get tired of asking for the help they make tired of giving the help so Um, you know, the goal is to get back to independence at some point, I think for everybody around you and probably for you yourself you know, because most people want that level of independence especially if you remember life before. So I think that it's important to remember and yes, I know it is super annoying and don't never stop being annoying to hear that it takes time. But I think three years plus into this I can just say that it does take time. There are some times small wins sometimes there are big wins take the wins as wounds and learn from the struggles and you know, appreciate the successes and yeah, I think that's such a relief now but next time we've talked a little bit about the family dynamics and caretaking some of the unexpected twists and turns that happen there. Of course, it could happen in any aspect of life, whether you can do it it's never easy to deal with my family this episode and