Steve Schwier (Second Episode)
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“I have dealt with meniere's disease for 9 years. I did very little in that time but learn how to manage my new life. I decided to start advocating for my silent suffering community. I rode an e-bike from Denver to Columbus. It was a success and i decided to write a memoir of my adventure. I am a cast member on the upcoming docu-series the life Rebalanced Chronicles.” - Steve Schwier
Steve Schwier is an author, activists, and cast member of the new documentary Life Rebalance Chronicles. Steve has meniere's disease, a disorder that causes vertigo, dizziness, sensitivity to light and sound. We started the podcast as friendly strangers. After an hour, I realized I gained a friend. Steve is funny, direct, passionate, and brimming with energy. He doesn't shy away from his difficulties, but he's also seeing himself change because his work is changing people's lives. His book "On the VertiGO” chronicles the journey he took with his brother a grueling 1400 miles bike ride from Denver to Columbus, Ohio.
The purpose, to show people the pain and the beauty of what it's like to have an invisible disability. Steve is making the invisible visible, and people are realizing that they're not alone. I can't wait to read it and have him back for a second episode. If you're enjoying the podcast,
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Hey, everybody, welcome to the show. I'm Gustavo, the host of the Enabled Disabled podcast. We are excited to welcome Steve Schwier back on the show for the second time. Steve, this is the first time we've had a repeat guest. I'm Super, super excited to have you back on the show. Steve is the author of on the Vertigo. He has done an incredible amount of work raising awareness for mental health disease. If you haven't checked out the first episode, please do a brief description of myself. I am a middle aged Brazilian man with short black hair combed to the front. I've got a blue Polo shirt on. I am in my conference room right now at work with some beige walls and some photographs of some of the work we've done. So, Steve, welcome to the show, man. Welcome back.
Wow. I had no idea I'm your first repeat offender. I like that. It makes me feel important. Yeah. I'm in my bedroom. I'm in my bed where I spend most of my time, or on the couch. It's a cluttered bedroom, but I have plants around and stuff like that. And I'm just sitting on my bed and my phone's propped up on my pillow. I've got reading glasses on so I can see you. I've got short dark hair and I've got headphones on so that I can hear you clearly and you're getting a good audio. So, yeah, thanks for having me on again.
Welcome. You're always welcome back on here. It's a pleasure. So I have a lot to ask you about. And since the last time we met, I have read your book, which was phenomenal, which we're going to get into. But first of all, can you give us a recap of what you've been up to, what you've done, what's going on in your life since the last time you were on the show?
Yeah, a lot. I just put the book out when I was on your show the first time the book had just come out and I wrote it about a bike trip I took between Denver and Columbus, Ohio. And so it's the story of that trip, and it also has some background on me and it also has my brother Dave's voice. He writes some stuff in there after that. Once the book came out, we decided we're going to do another trip and we're going to start a nonprofit. So we've been fairly busy and the nonprofit was okayed by the IRS while we were on our trip to San Francisco from Colorado again. So we came back and got the letter and that was good news. And it just snowballed into the nonprofit. So two trips down in a book and now the nonprofits are up and running. And I've just got a great board of directors, a great team surrounding the nonprofit. They're hands on and involved, and I'm doing my part and I'm the face of the nonprofit, but I've just got a fantastic board of directors that's working their tails off, getting the websites up and running and trying to get corporate contacts and stuff and a LinkedIn page up and going.
And just a lot of the business aspects of the non profit. And it's a lot of work, but it's rewarding. And I'm hoping that it will just give us the next jump up to be able to make a bigger and bigger difference.
Nominal is the nonprofit. What's the name of the nonprofit on the Vertigo?
And it's a 501 C three, so we can give tax deduction for anybody who donates. Our website is onthevertigo.org that simple. So all one word. All one word ontheirtigo.org. And there you'll find all the information about me and what we do as a nonprofit. And there's also links to, like, your enabled disabled podcast is Linked in there and other resources that I feel are important to me and to what we're doing. So there's just a ton of information there. All the videos we've posted, are there pictures, newspaper articles, all my podcasts are on there. So, yeah, it's a lot of information that's really good. Hopefully it'll help people steer. Hopefully people can get steered into the right direction if they find me. And they have Miner's disease, which is of a stabular disorder that gives you vertigo and dizziness and nausea and balance issues and hypercosis and problems with your eyes, light sensitivity. So there's a lot of symptoms, and it's scary when you first get it. Your whole life changes. And so if people have many years and they find my site, then I want them to be able to be directed to really good resources that will help them even more.
So the main purpose of the nonprofit is to raise awareness. Foremaneers disease, educate people, and you're raising money to help find better treatments? Yes. Okay.
Yeah, it's all that in one ball. And one of the things I've been doing lately is trying to narrow down our mission so that we have a product to sell. Because right now I've done bike trips and I wrote a book and we started a non profit. But people are only going to donate if they see what we're doing and how we plan on doing it, something that they can get behind and be like, hey, this is a rare disease. Yeah, I'd like to support this, and it's tax deductible, but yeah, it's mainly raising awareness, giving people resources from our website and then raising money for research. And then our board of directors will decide how we're going to allocate the different finances. Right now, we don't have a ton of money. We're still at the start up point. So we're planning on hopefully grabbing some bigger corporate dollars and then we can make a bigger difference.
Absolutely. Hopefully part of that awareness raising, too, would come from I know on your book you mentioned that you saw nine doctors trying to get the right diagnosis, trying to figure out what was going on. Nobody was really helping you either, because they weren't specialized for various reasons. But when you found that 10th doctor and things clicked and you finally started to see some improvements or at least some stabilization, that's so important. And I would hope that you guys are also going to help educate and raise the awareness for more of the medical community so more people can understand what it is and what's going on and how they can treat it.
Absolutely. I have a lot of people that around the world that bought a copy of the book just to give to their doctor, because most of the time what I found until my 10th doctor, and it was three years and through nine doctors that I knew more about what was wrong with me than they did. You know, I mean, they can run tests on me and tell me that you have a balance problem. But for me, I'm living it every day. So it's like getting from A to B. And that 10th doctor was a guy who settled it down. And we started working a program to get me to where I could be up and functioning again. And that was losing my job, losing playing music. I lost everything. And so it was just important to get back up and just start being upright and being able to get out of bed each day and do something.
You went on this first trip, this first bike route, and I want to talk about both of them because I'm interested. I still don't know some of the things that happened on the second ride and how that was. But the first book, I don't know if you're going to do another one, but it's a gripping read. I could not put it down. The first kind of thing that I want to talk about was when did you start to realize when you approach people? I know you'd say in the book, for example, that obviously you're riding for days, you're out of campgrounds. It's not like you're staying in luxury hotels and chilling out like you're riding 100 miles a day. Right. You and your team, your brother and a couple of friends that went on the trip. I actually had two brothers that went on the trip. You're looking rough around the edges. How did you approach people to start telling your story? And when did you start to realize just how generous and receptive and helpful so many people were being?
Well, first of all, I attract a lot of attention because I have lots of tattoos and I like to wear skulls. And I'm not a Goth guy, but I'm a rocker guy. So I dress in black T shirts and I don't mind wearing ripped jeans. I don't dress to impress. The first three days of the first ride was more getting my feet wet. It was just head to the ground stone. Can I do this 100 miles today camp. 100 miles, camp. 100 miles camp. Then we took a day off, and it's in the book. We went into a diner, and there was only one other table full of people, and they were all in their 70s. And I walked by and I could just tell there was a curiosity about me because this is a town with, like, 1800 people in it or something. If I remember super small farm town in the middle of Cans is nowhere. And then I come in looking like what I drew attention. Then they invited me to sit with them and have coffee, and we chatted. And I just found this. If I just told my story and what I was doing and why I was doing it, people just gravitated to it.
They clutched onto my story. And like I say in the book, I got done having a two hour breakfast with them, and every one of them donated money to my cost. I'm a stranger off the street, so that was the first time I really knew that. Okay. My plan just has to be real be myself. And I would just drive through towns and talk to people at gas stations, and my Ebike has stickers all over it, and that attracts attention. And it's pink. So what's this guy riding a pink crazy electric bike doing in my town? And so people would just come up and look at my bike and be like, wow, is that one of those new fangled electric bikes? Boom, doors open? I tell them, hey, I'm riding all the way to Columbus, and they just gravitated towards it. So it's nothing special. That no special gift I have. It's just. I think just being myself was enough.
Well, and it's interesting that you're being yourself, but it's also sparking people's curiosity, right? Like you said, who is this guy I've never seen before, riding into town with this interesting looking bike and rocker dude and what's going on here? So you're inviting them to talk to you? You're inviting conversation?
Yeah. One of the most exciting things when I look back on it, those things are kind of individual things that happened. But when I look back at the trip as a whole, I hung out with Harley's people that were riding Harley's and drinking beer with them and chatting them up. And then the next night, I'm spending the night in a Church in the pastor's side yard. And it's like I had the whole gamut. And I just loved meeting the people. I talked to homeless people, I talked to blue collar people. I talked to white collar people. So when I look back at the trip as a whole, it just encompasses that humanity is humanity. And like I've told you before, everybody has some issue that they have to deal with, whether it's a bad marriage or a crippling disabling disease like I have or the handicap that you deal with every day. It could be a troubled child. Your child is a teenager and he's getting into trouble. All those things happen to everybody. So just being real and being honest about what I struggle with, it connects your souls in a way that is what I think makes humanity one of the greatest things.
The greatest things about humanity.
You're authentic about it. I started a YouTube channel recently. We've posted some podcast episodes, and we're going to be doing some Owen video. But one of the things that I'm struggling with or trying to get better at. Right. Is to show more aspects of myself, my life, my whole body. Right. People only see me kind of from the neck up right now on the podcast. It's not easy to put yourself out there like your whole self, your whole being. Right. I was pretty amazed that how vulnerable you were willing to get on that first bike ride, especially when you had a Vertigo attack. You chose to record that you manned up and you showed it and you talked about it as you were experiencing it. That's an unbelievable act of courage. And thank you for doing that. But did you know ahead of time if this happened, you were going to do it?
Oh, yeah, we discussed that. The whole team discussed that on the first three days while we were settling in, and I would get done with 100 miles and collapse into my camp chair and just be just look like shit, wiped out. And then they were like, oh, we want to ask you some questions, but not if you're not feeling like it. And then I made the decision, no, we're filming everything. The good, the bad, and the ugly. And that Vertigo Attack was a brutal one. And it was in a strange place in the parking lot of a Church, in the sun, on the hot asphalt. And writing that chapter was probably the hardest part of the book. It probably took me days to write that one chapter because I kept revisiting it. And when you revisit it and you're actually putting it on paper, man, it just drives really deep into it's, like it's happening again. And so it was actually easy to write about. But emotionally, it took a toll to have to write that chapter. But that's the most commented on chapter of the whole book.
You could have backed out from when you were on the trip, right? You could have shown everything else and you could have backed out of filming that Vertigo attack. You could have even written about it. And nobody would have thought any less of you because of that. Nobody would have said you're less courageous or you backed out of this. It was perfectly okay not to do it. So in that moment.
It'S.
Powerful and it shows who you are as a human being that you still chose to do it. Right?
No.
Matter what. So I commend you for that.
Well, I think it was just as hard on my brothers. Dave and Brian were there, and Brian's son Emmett was there, and I think it was hard on them because I don't think they wanted to film it. They were just like, oh, my gosh. And I'm just like, no, grab the camera and we're going to show the world what a vertical attack looks like and what it feels like. It's horrible. It's just a horrendous place to be in your headspace. And I know a lot of people that have had busy spells and stuff, but actual vertigo attack, it's unlike anything that you ever feel. It's surreal. You just kind of black out and your mind is sharp, but you're floating. It's just a very difficult thing to explain.
You described it really well in your book. I can only imagine what it's like based on that description, but it was very detailed, very descriptive, very powerful. I would encourage people, if there's no other reason to buy on the vertigo buy it for that, because there's a lot of deep, powerful lessons there. When you said that you had to learn to not fight it, to just let it go and just be within it. That's some Zen Buddhism right there. That's some deep enlightenment of what you're going through and who you are and how to get through it.
Yeah, it was no fun, but I'm glad I recorded it, and I'm glad I wrote about it in the book, because, like you said, I could have just shown the positives and the stuff that was going on that were good. But during that trip and the second one, there was really good days, and there were days where I just wanted to quit. I mean, twice on the second trip, I pulled my bike over. I was by myself in the middle of the desert, pull my bike over, put the kickstand down, and just sat down and cried. I'm done. But after throwing a little fit, you hop back on your bike and start pedaling and put in another 50 miles and call the day. So I don't know. It's my personal challenge. Nobody would blame me for quitting or stopping or anything, especially if they have a vestibular disorder, because they realize how hard this is. But that's just not me. I don't like to lose. I'm super competitive, and I just like to prove that I'm just going to challenge myself and do it.
In the book. It's really interesting that usually at the end of every chapter or most of the chapters, you're kind of giving the disease a fuck. You. You're saying, like, I won today. I still went through it. You call it a monster, and the monster is always there, and it's always lurking, and it's a part of you. But your purpose and your drive is to just keep showing up and be just as consistent and be just as present and to keep at it. Right. So it's not beating you. You're just as constant of a presence right there's. This struggle. But also the two questions I want to ask you is, number one, has that struggle the way you're framing it in your mind, the way you're thinking about it and living it, has that changed at all? Is it still the monster? Are you still seeing it some way? Yeah.
Every day that I make it through, a day I do that up to the sky, just like it's like you said, I just give my disease a fuck. You like, I beat you today and you're not going to keep me down. And it's funny because when I was riding that I'm like, people are going to think I'm making this up. There's no way he crawled into his tent after riding 100 miles, and he literally would flip off his disease. But I did it, and I still do it today. It's just my way of compartmentalizing it, I guess, to a degree, because it does feel like it's like a haunting thing that just like it's a dark cloud that just fills my head. And I always feel like it's trying to wrap me up and make me dizzy. My brain can be clear sometimes if I don't have brain fog. So it's not like I'm having hallucinations. This is a real monster. But for me, I can compartmentalize it by saying, okay, my disease is what's making me dizzy today. My disease is what's keeping me in bed today. And it's not my fault. So I can't take the blame for having a disability.
And that was something I had to work through for the first ten years was how do I get through without this thing crushing me every day and keeping me in bed and keeping me depressed? And I think the first bike trip was the first time I was just like, okay, now it's time to fight it's me against you. What can I do while you're making me sick? What can I accomplish, if anything, while I feel this bad? But let's go see, because now it's on. I'm done caving to what I think the monster wants me to do, which is suffer all the time. And I hate that fact. So, yeah, it's kind of put the gloves on and let's go out there on the ring.
But you also said in the book, for me, it was the most powerful line, that you also learned to love yourself.
Yeah, that's at the very end.
Yeah.
Yeah. It took that whole trip. It took that whole trip for me to come to that realization, because when I'm on my bike for 100 miles, it's just me and my head. So I had a lot of time to think and a lot of time to scrapulate through why I'm doing this trip, why I feel certain ways. And I worked through a lot of stuff personally, I'm glad that people followed the trip, and I'm glad that they got inspired to maybe go out and walk around the block when they haven't left their house in three years. That makes me feel good. But the trip was. It was a mental readjusting. Is the monster still out there? Yes, he is. But at least now I can kind of compartmentalize. Like I said, I don't have to carry the burden of my disease the way I thought I was going to have to for the rest of my life. And so that first trip, it did change my perspective on just being okay, being sick. It's okay. You're sick. I'm going to be sick the rest of my life. This is chronic dizziness. This is a chronic disabling disease I have, and it's not going to go away.
So what do you do? You got to learn to live with it.
You're learning to live with it. You're putting your feet in the ring again. You're back in the game, but you're not feeling I'm asking you because I'm not quite sure. When you say you learn to love yourself is that you talk in the book about how maybe it's shame, maybe it's humiliation to ask for help or to get sick or to need this assistance. Is that where you learn to accept that that's okay. And that doesn't make you any worse of a human being? Am I going in the right direction there?
Yeah. And the stuff I deal with physically is very difficult. But the stuff I have to deal with emotionally, like you said, guilt, shame, insecurity, self worth. I mean, that's where the real battle is. I've come to the grips with this is how I'm going to feel physically. But to be honest, Gustavo, I'm not okay being sick. I'm just not okay with this. I don't agree that this is the way I should have to live. Of course I challenge it. I challenge the monster, but I'm not okay with it. Maybe I will be someday. But the way it affects my wife, she watches me suffer, and that's super hard for her. I hate that she has to watch me suffer because I can't not suffer and she can't not see it. And so there's this dichotomy that goes into every marriage with certain disabilities that it's just as hard, if not harder, on the spouse. She has to suffer with me by watching me suffer. And it's not fair. It's not right. It pisses me off. But we've been married for 25 years, and she's stuck by me for ten years with me being sick, and hopefully we'll make it to the end.
But yeah, like you said, I'm still coming to grips with a lot of the emotional stuff, and I think I might deal with that the rest of my life, too.
It's a process, and I hope you do. I'm interested, and I want to see how that evolves. And I'm talking it through more when you're meeting with other people because you met some people for the first time on that first trip who also had Menures disease and you talked to them, did they have similar experiences with their spouses or does it same kind of shared frustrations and difficulties?
Yeah, absolutely, for sure. And meeting other people with Maneers for the first time after having it for ten years and never having heard of it before I got it. That was a really interesting experience. Sue Ensley and Amanda Jew in Dayton, Ohio, sitting with someone where I can just look into their eyes and know how they feel and hear what's going on in their head, that was a surreal experience and it was very healthy. It was healing. And my disease is invisible. I don't have anything that would let anybody know that I have this horrible disease. If I could crack my head open and just let it show, it would probably be easier. But being with someone who knows what it feels like in my head and conversing about it was very healing for me. So that was one of the reasons I wanted to meet people with my disease.
I'm sure it was healing for them, too. And that has to be powerful to meet somebody who's going through the same thing and being able to connect in that way. What would you say as you moved on to the second trip? Because the second trip you went out west instead of going east. Right. So you had to go through I remember getting a text message from you about not having very much fun in the desert. Can you tell us maybe give us what were some of the moments there that were that were most memorable, that built upon this self understanding and this appreciation and this acceptance of yourself that happened on the second trip that maybe surprised you or just built upon what you already knew?
Deciding to do the second trip was tough because I knew what I'd be getting into. The first trip, I just Wong it and I had no idea what I was getting into. And so it was just all, can I do it physically? Can I ride my bike 100 miles a day? Can I camp most nights in a tent when I feel like shit? So that trip, I went in very stupid, and I kind of liked going in stupid because with the second trip, I knew what I was going to be getting myself into. I knew what it was going to be like to camp in my tent. I knew what 100 miles feels like on an Ebike. I know that the weather was going to be headwinds because I'm heading west and I hate headwinds. You know, reading the book, I hate headwinds. It can break me down mentally. So it was more of a mental battle. The second trip going west because going through the Midwest, there's little towns all over the place and then you go west and there's nothing. I mean, I spent two States, Utah and Nevada on what's called Route 50.
It's called the loneliest road in America. And it says it on the sign and there is nothing out there. There is nothing. It's not like I see some trees and I can be like, oh, I'm going to come up here and sit in the shade and maybe talk to the farmer or pull into this little town and sit in a cafe and you're on your bike and literally the road is bone straight for 20 miles and then it goes up and over a mountain pass. But you see that mountain pass and I know it's 4 hours of just riding towards it before I'll get there. And that was like a mental Jack up because you just stare at that path for four or 5 hours and you're just riding in the same straight line so it could get discouraging. So that was different than the first trip. The first trip had more nature and stuff. This was straight up desert. But then once we got to Carson City and got into Lake Tahoe, the whole trip kind of spun in a really positive way because I was kind of getting discouraged. But two of my friends, Mark and Bill showed up on their motorcycles to finish the trip with us.
My wife obviously was riding her bike with me when she could. But once we got the Tahoe and we got back into a mountain scenario like where I live, it lifted my spirits having my friends just show up out of the blue. My brother Brian flew back in to drive the van so my wife could ride her bike more. So all these things kind of came together at Carson City that just kind of gave me a second wind and that gave me the push to go over, get it done. But yeah, the desert was just horrible. There's just nothing out there.
Desert. That's a tough climate. How are you able to plan for the battery changes in the desert when there's just nothing out there? Was it just a matter of taking more batteries with you and charging them in the van?
Yeah. Whoever was driving the van, my brother Brian or whatever, he would know about how far our batteries would go. So we had to plan a little bit more. But there's only like one day where I got stuck without having a battery and I was only like 3 miles from where we were going to stay for the night. So I just called and said, come and get me. The first trip I rode every inch. That was my goal in this trip. There was three times where I literally put my bike in the van and I did it once for a whole entire day after our van broke down. I didn't want my wife and son to be stranded in the desert. So I took a whole 100 miles day and just drove that 100 miles in the van with them and with my bike in the back. Just because I didn't have to prove that, I didn't have to prove like the first trip, I felt I had to prove I could do every inch or I wouldn't be okay with it. This trip, there was a time where we were going around a reservoir, a big reservoir, and there was two lanes, super skinny.
It was holiday weekend. There was cars and trucks, and we came around the corner and I'm like, no, hell no, I'm not riding my bike on that is like so dangerous. And this is the only way through. So my brother Brian and I through the bike in the van and we drove that little stretch for 1015 miles around the reservoir and then pulled it back out and I took off again. So I gave myself more Grace on this trip where the first trip, I just had a lot more to prove myself. Where this time it was more like I have my wife's riding a bike with me a lot of the time. So that stress of making sure she's safe as semis are just blasting bias. Of course, we got bright vests on and stuff, and we're as safe as we can be, but it's scary. This trip had a lot more scary times where I felt like, oh, this is a really bad, dangerous situation that me and my wife are riding right now. So it caused some anxiety. And then the van broke down twice. And that added some anxiety because we just bought this van like three weeks before we left.
And it was specific for us to do these bike trips. It's old. It's a 93 old beat up van, but I love it. We call it the Blue Whale because it's just a mammoth van. So there is stress on that, too. The van going to make it each day. There's just more mental stresses that made it difficult.
I'm glad you gave yourself that Grace, because I know that when you would cross a bridge or you get into certain towns that were more populated, you were definitely fearing for what could happen and what could go wrong in the first book, but you were determined to do it anyways. I'm glad that you stepped away from that a little bit on the second one because like you said, you already proved that you could do that. You didn't have to do it again.
Yeah.
Just curiosity here. You mentioned in the book that bananas are an important part of your diet. Why do you not like them? Because I don't think I've ever met somebody that can't stand bananas.
I heard someone say this last week on a TV show and I can't remember what it was. But anyway, they said exactly what I tell people. It's not a taste thing. It's a texture thing, okay. It's just I have to force it down because like I say in a book, it's like chewing a dog turn. To me, it's just they're gooey and it's a texture thing, like bananas. I like the flavor of a banana. Like banana gum or candy or suckers. But just eating a regular banana, it's just torture. I just have to choke it down. Since that trip, I still eat I'm eating three or four bananas a week now, and I think it's helping.
Have you just tried to put it into a shake instead? Just blend it up so you don't have to eat it.
Yeah, it's just smoothies. You can have 20 strawberries, and if you put a piece of banana this big in it, you can taste like, to me, it's banana. It just drives me crazy. Yeah, me and the banana, we've made peace with each other, but we still don't get along too well.
Personally. By the way, again, I can't imagine myself doing that bike ride, but if I did it, I can tell you that my moment where I think I would have stopped was with the pig trucks. No, thank you. I'm good. I'm going to pull over and we're going to call it today. I'm not going to put up with that.
Yeah. Missouri was just miserable. The whole state just beginning to end. It rained every day. It was cold and horrible. And then I didn't know this until I asked a gas station attendant. I'm like, what is up with all the flippant pig trucks and the hog trucks? And they're like, well, it's harvest time. This is the time everybody's taking them to market. And I'm like, oh, so September is not the time to go through Missouri because there's pig trucks. I mean, they're just delivering their hogs. When I decided to write the book, I wanted people to get something serious out of it, but I also wanted it to be funny. I wanted it to be comical now getting splashed in the back with pig shit. There's nothing funny about it, but in a way, there kind of is because it's like I'm out there just getting blasted in the back and it literally just stunk. You just kind of have to laugh at that and just be like, that was just a silly situation. And it was fun to write about that. It was fun to write about the Doberman chasing me that came after me.
There was just a lot of things that just happened naturally. That when I was writing, I was like, oh, my God, I remember that happening. That was really funny. Put my own spin on.
Yeah. I didn't know Doberman could run that fast either, so that's good to know.
29.5 miles an hour. My speedometers burned in my head from seeing that because I thought, this thing is going to rip me down.
Yup. I'm glad you made it through that. But I did not know they were that fast, but clearly they can't keep up the pace as long as you can.
Yeah. And my Ebike Max is at 30 miles an hour unless I'm going downhill. So on a flat, the fastest I can go is 30 miles an hour. And that thing was right next to me before it gave up. It was crazy.
Yeah. It was also really cool how you threw in some of the interesting scenery and where you got to go and shoot Hoops in the place where they filmed Hoosiers, right. Those are some really nice touches in there.
Yeah. That was magical for me because I'm just such a sports freak. I can't play a lot of sports anymore except golf, but, yeah, that was special. And just stumbling on it, I had no idea. It just showed up. And there was a lot of magical stuff on that second trip. Didn't have as much of those kind of cool discovery things, but there's definitely some fun stuff on the second trip and funny stuff, too. I'll tell you a story later.
Okay. You went all the way to California. End of the first trip. You met the Mayor. Remind me of the city in Ohio.
Westerville.
Westerville. Thank you. Did something similar happen? I know you've built all this momentum, and like you said on the Vertigo is like an established brand. Now you're making headway. There's no headwind right now. It's mostly tailwind. Did something happen kind of climactic like that on the second trip? No.
Carson City was probably when my brother flew back in and my friend showed up. That was a good turning point. A really positive turning point. And we had a lot of fun after that. The desert was a struggle, but after that, the scenery was better. There was more people. Really good bike path system in a lot of California, like going through Sacramento and going through north of San Francisco and dropping down. The bike paths were really well done. So it felt safer, too. I felt safer if I could spend most of my day on a bike path, obviously. So, yeah, those were positives.
Awesome. And I know that the last time we spoke, we were talking about again, it was unreleased or they had just only released the first episode, but you were on The Life Rebalance Chronicles. Kimberly Warner on Fixed Media did that. What was your experience like with that, and what were some of the feedback that you heard from people that watched it?
People loved it. And I've actually made a lot of contacts with people through that that watched it and then contacted me and said, hey, this really helped me. This is what I needed to see because I felt so alone and isolated and now I don't feel so caged in by my vestibular disorder. So, yeah, tons of good feedback. It was really fun. Of course, you know, working with Kimberly is just a pleasure. And she's just a little snot rag that just me and her poke each other constantly. We talk about serious things, but we just poke each other and make fun of each other constantly. And it's a really fun relationship to have with her. As we said earlier before we came on the air, me and you are going to be in the next Unfixed episode, and that's Kimberly Warner doing it. So I'm excited to be a part of that with you.
Me, too. Kimberly's phenomenal. All the people that I've met that have been on her documentaries have been phenomenal human beings. And it's just great to she has a nose for picking out the people that are going to be featured. She's quite good judge of character, but also just she's bringing some great people together in her movies.
Yeah, I like that.
That's good to hear. So I also really liked on the book how I'm glad that Dave, your brother, wrote the chapters and parts of them, and we got to hear his perspective and what he was worried about and what some of his experiences were. Maybe one day he could be on the show as well. But you both became a lot closer after that trip and bonded, and he understood on a much deeper level what you were going through. So kind of can you share a little bit, talk a little bit more about that and share how important it is for parents, for friends, for family to not fear, to not pull away from people when they're going through that, that they should do the opposite. It's not easy, but there's so much potential there for understanding, for growth, for just bonding as human beings.
Yeah, I could speak on that for hours because my brother and I, Dave and Brian, we're all close. We've always been close. They know my battles to a degree, and I just love them both. And we also have an older sister, Karen, who lives in Denver. But with Dave on the trip, it was the first three days were very important because Bill was riding his Harley, Dave is driving the van. Bryce was in his pickup truck. And so we had a good team to start with. But like, I write it out in the book that there are times where they would see me after 10 miles and just want to pull me off the bike because they're just like, he's killing himself or he looks like he's dying or we have to stop hitting this madness. And it gave us a chance to communicate, and it helped me explain to them, no, I'm good. I will let you know if I can't ride, which there were times where I quit early on certain days when I couldn't ride physically. But it took a few days for Dave to trust what I was telling him. He's like, oh, you're trying to be Superman.
And I could see in his head that he's just like, oh, he's in over his head, and I need to stop him. But it gave us a chance to communicate, and it gave me a chance to explain to him this is what my days are like. I'm like this all the time, whether I'm home on the couch or on my bike riding 100 miles. There's no difference. It's still me suffering and trying to get through the day feeling as best I can. And so it took a little while for him to trust that. And we became closer because it allowed me to show him what it's like to live with Maneer's disease all day, every day. He had come and visit me and see me sometimes, and sometimes I was sick and sometimes I wasn't. But he was in charge of getting me to Columbus from Denver. So he felt a huge responsibility. And I know that made it difficult on him mentally. It's like my wife on the second trip was with me the whole trip, and she's just like, man, I don't know if I could watch you do that again. I don't know if I want to be a part of that because it's hard to watch.
It's like it's stressful. It stresses me out when you're riding your bike in traffic and you could fall over or crash just like it's stressful. And so for Dave, that trip was stressful, but he worked through that stuff, and we worked on it together, and it built a better trust. And now he's 50% of on the Vertigo, he does all the computer stuff still for the nonprofit, we have a computer, a guy named Jeremy who is a computer guru. And him and Dave have been working endlessly to get this website up and running. And Dave through that trip, also started following some of my meneers groups and my support groups. And he's coming to contact. And now he has friendships in my community that are very tight, and they trust Dave as being part of on the Vertigo. I'm in private groups that are just private for Maneers people, but they let Dave come in and be part of the group so he can see what we're talking about and the issues we're dealing with. And he's asked deep into Maneer's disease stuff right now, and I totally appreciate that about him because I can't do a lot of these things that he does for all the Vertigo.
And like you said, I think the book is better for having Dave's voice in it. I think it really just threw a really cool angle on the whole trip that Dave could comment and share his thoughts because like you said, it's about other people, family members, brothers, sisters, aunts, uncles, believing what we are saying. And it's just so important.
I thought it was so important to have Dave's voice and his perspective on it and to see in the book and to read about that what you said trust, right. The trust to say you're going through this, it's risky, but we're doing it. And I trust you, Steve, that when you say you can't do it today, you can't do it today. And until you tell me that, I'm not going to stop you, I'm not going to get in your way. That's huge. I tell coworkers and good friends and my brother growing up with me picked up on that. But it's a huge turning point when people understand, hey, I walk differently. I don't need help to do a bunch of things. When I do need help, trust me that I will ask you for it. I'm not ashamed to ask you for the help unless I have something to prove. I'm not going to fight with something that I don't need to fight with. But having that trust and that understanding where people know people respect that is huge. It feels like you're being heard and listened to and accepted.
Yeah. And the thing with Dave was it wasn't always a hug Fest. Every day. There's a lot of times where we would just get done and we'd have to go to our separate corners because we did get in a couple of tips. And when you take on a challenge like that, it just seems so like a Mount Everest thing. There's going to be times where we disagree or we have different judgment calls that we're doing. Or one day, Dave, he didn't feel appreciated, and I didn't know he was feeling that way. And so we got a little TIFF. And it took us to work through for me to explain to him, no, I appreciate every single thing you're doing. I just don't show it all the time because you know what I'm saying? It's just I never once took any of my team members for granted. But, yeah, maybe it looked like that to them if I just collapse and drink two beers and climb into my tent and just ignore everybody, because that's what I had to do to survive that day or evening. So, yeah, Dave and I, we get along really well. We still have our arguments and stuff like that, but it's just brother and brother.
It's not unhealthy. No.
That's how it is. No. I have the same experience with my brother, and it's part of having a relationship, a meaningful relationship in connection with another human being.
Yeah. When we were teenagers, we beat the shit out of each other. Like, literally my mom would come home and there would be blood on the kitchen floor, and she was like, what the hell happened? And me and Dave are just full on. We are teenagers. We had a lot of teenage angst and stuff like that. And we're very close in age, so there's a brotherly rival, sort of. But now we're not throwing punches or anything. We're just trying to help each other get through life.
Yeah. I mean, you've matured and you both matured and have different perspectives. And that's teenagers or teenagers, that happens.
And he right now is in the process of on April 9, we're having our first official nonprofit fundraiser at a golf course in Port Charlotte, Florida. And the Maple Leaf Golf and Country Club invited us to come and do a whole day shotgun lunch, live music, silent auction, prizes, giveaways trophies. And we're going to do a whole golf day, 18 whole shotgun. So we're right now planning that for April. So that's going to take up a lot of our time getting all that stuff set up. But I've got a great team on that, just like I do on my trips. I'm surrounded by just people in that community where the golf course is at, and they're just being awesome. And my cousin Mary Lynn, who was in the book, her and her husband Jim, they live on that golf course now. And so they're working hand in hand with the staff there to get all this ball rolling with the golf outing. But I just wanted to mention that because that's awesome. I just got to get to Florida somehow.
No, that's fantastic. What else can you talk about that you're planning with the foundation or other events or other activities, other ways to help raise awareness and move the needle?
One of the other things we're discussing, and like I said, we're just in our first month of starting up being an official nonprofit where we can give tax deductions and stuff like that. So we're just trying to get right now, we're just organizing. And all the board members are trying to find their niche and what they're best at. We got a guy that does marketing. We got a guy who does computers. If you look at the board of directors, I'm Super lucky because it's all top notch people. Like they're smart people, people that were CEOs, people that run had their own companies. I'm talking a lot of powerful people. So we're all just kind of trying to figure out how we reach out and how do we get this thing started. The golf thing is going to be our first official. But another idea we are throwing around is maybe doing a worldwide virtual bike tour where people can do it on their pelotons or whatever at home, and they get donations if they can do so many miles on their bike in their bedroom. But do it as not a competition, but as an event, like a six hour event where people can you ride your bike for 6 hours straight.
And if you do, people can donate money to on the Vertigo. So that's another thing we have in our back pocket.
Awesome. That sounds like a great idea and a great way to get more people involved and feel like they're doing something active participating. I like that idea a lot.
Yeah, it's really good.
There might also be some we'll talk offline, but there might also be some synergy there where you could potentially have some artwork done that centers around you, your experience. I know one artist who is on the show, and her episode is being released really soon that she has some mental health issues, and she did. There's a couple actually. Elizabeth Jameson used to do that, too, right, where they take an MRI of their brains and then create a piece of artwork around it.
I like stuff like that, just that creativity. And that was one of the things that I really wanted to talk to you about and get your feedback on a little bit. If we have a minute, let's do it. But like, along those lines, I lost being a musician. I'm a bass player. I have been since fourth grade. And for the last 40 years, I've played in bands up until I got sick yesterday. For the first time in four years, I pulled my base out and plugged it in and played a couple of notes. And so it got me thinking about losing passions to a disability. It was fine when I did it, but a couple of hours after that, I broke down because it just crashed in what I lost, and it was hard to swallow. I was listening to your interview with Hillary, and her passion is like horses. And listening to that made me think also, it's like, how do I inspire people that lose passions to take a chance at stepping into the water a little bit again on the vertigo. I've always wanted it to be something that inspires people to get out and maybe walk around the block or take a jog or even just get in the car and go to the grocery.
Baby steps physically. Don't let this keep you in the house, because Meniere's disease keeps a lot of people in the house 24/7. But after playing my base, I think I need to add in a new angle to inspire people about what it looks like when you lose a passion. Because I think they're in our DNA. I don't think I picked music to be passionate about. I think it picked me. It's in my DNA. I think once the first time I heard Led Zeppelin, I was just like, I have to do that because it just made sense in my life. It just flowed out of me. So as far as losing passions and getting back into them, what's your thought on passions and regaining them? Losing them because playing my bass, it mentally cripples me that I can't do that anymore.
When you picked up the base and you played a few notes when you started to play it, is it something that you think you just you want to play again and try again and just see what you can do with it? Or is it like, why did you pick it up? Were you curious?
I was talking to a good friend of mine I call him Bones, and he's an artist. And this is what reminded me of when you talked about the lady that does the art, and he's got mental disease, and he had to quit doing art because he couldn't hold the pencil still and he couldn't focus his eyes on the artwork. And he does really cool, detailed, dotting stuff like that. And it's a passion that he had that he can't do anymore. And so I told him, hearing you do that, I'm going to challenge myself, and I'm going to plug my base in for the first time in four years and play for five minutes and just doodle for five minutes and then just put it away and see how it feels like, how it affected me. And it affected me really hard. I cried buckets. I think it's kind of grieving. I'm having to grieve that loss. And maybe I've dealt with my issues with guilt and shame more than I've dealt with the passions I lost. So I don't know. I think it's just kind of it's in my mind right now, like losing a passion and can we regain it?
And if we can't, what's it going to look like?
Yeah, I think that's a great question, and I haven't answered your question yet, so I'm going to take a stab at it. When I was younger, I used to play a lot of basketball. I used to play a lot of tennis. I loved both of those things tremendously. I don't play anymore for various reasons. I don't know. I think I could still do it if I really wanted to, but I don't know. My body's in a different place. 40 years of wearing the prosthetics and takes a toll on the body. So for me, I've transitioned into I've always loved swimming, but not the way I love it now. So swimming has become my substitute, and I'm exploring that. I'm exploring that and enjoying it, and it's still challenging, but it's very different than those other sports. So I think part of my answer to that question is we're all capable of having more than one passion, and we can explore those different spaces. I think it's part of the process of aging where you can't do some of the things that you could do before, and that's okay. But there's other things to explore and learn about and enjoy in yourself.
Another thought that comes to my mind is because you were a musician and you're a really good musician. I actually enjoyed reading what you had to say about the music you were listening to and why you enjoyed it right in the halls and notes T shirt. So I think if you could explore in writing or in podcasts or on YouTube or your social media, the enjoyment that you still get out of listening to music and what music has meant for you in your life, I think you can inspire a lot of people into exploring music more deeply for the first time. Because most people hear music in the background, they're not really sitting down and listening to it and having it get in here. Yeah. So I think there's a lot of Zoom there for you to share that love of music and appreciation for listening to music. So I have one arm. I could have played an instrument if I had really wanted to. I was not musically gifted in that way, but I never did. Right. So for me, I channeled that love of music by learning to listen to it, learning to appreciate it.
And that's part of what I do in my business is creating really phenomenal music reproduction systems for people in the hopes that they can find that love and that space of whatever it is. It can be comfort, it can be transformative, it can be challenging. But all of those things that I have come to learn and appreciate for music, I want to share that with other people, too.
Yeah, go ahead.
Even though I can't play it.
Yeah. But like Bones, who is the artist? He lives in Switzerland. He doesn't play a musical instrument, but he's so passionate. And we talk about music all the time. There's another lady named Willow Gray that I'm friends with on Instagram and stuff, and she was a trained classical violinist, and she got Meneer's disease, hung her violin on the wall, literally hung it on the wall and didn't take it down for years. And this week she picked it up and played. So stuff like that is important. But for me, I just wanted to see what it would feel like, how it would affect me to play my base, because I've spent so many hours and hours and hours on stage playing live. I'll never get to do that again. Being deaf in my left ear and my right ear has hypercosis, which is sensitivity to sound. It just doesn't sound right. I can't pick out the notes, and it just sounds like an Am radio kind of crackly Am radio. So I don't think I could get back into playing to where I could enjoy it. Like, I know I can. But listening to stuff, like, on my bike trips, I have headphones and my left ear is deaf in my right ear.
Sounds like crap. But I love it so much, I just crank it up louder and just blast it in there and just try to capture that feeling again that I used to have with music. And so I never fell out of love with music, but it's just not the same. It's just never going to be the same again. So I grieve. That lost, but I don't know. Taking a chance and plugging my Basin yesterday felt pretty good.
That's awesome. I'm glad you did that. And who knows? Yeah, it's not going to be the same, but I would encourage you to just explore those other spaces that have opened up because of it. Right. In your perspective, your perspective even as an adult. Right. Your appreciation for yourself, for other people. Again, I'm not trying to paint like a rosy picture, but you understand a lot more than most people do of what it means to be a human being, what it means to have empathy, what it means to be courageous, what it means to step into a new experience where you don't even know if you're going to make it through that day. Right. So you've grown enormously as a person and you've done that in part because of your disease, but also in part because of who you are. And so I would just encourage you to keep one door closes and another door opens.
I say that in the LRC, in one of the episodes, I say that it's up to me to open new doors and who knows, it could go anywhere on the Vertigo I didn't think would go as big as it is, and it's just blown up and wasn't expecting that. And like I said, I don't put pressure on myself. It's going to go and it's going to morph into what it's supposed to be. It doesn't have to be what I want it to be. It needs to be what it's supposed to be. And it's like the book. I sat down just a Journal. 5 hours later, I looked up and I had eight chapters written in 5 hours. And I'm just like, Holy shit, I might have a whole book out of this if I keep doing this. But it wasn't that I intentionally decided to write the book. It just kind of started writing itself and it was always two steps ahead of me. I always felt like I was trying to catch up to the story and explain things, and it was very healing. And if I never even published it and just put it under my bed, the transcript and just left it there, I would have come away a better person for writing it and just having vomited out all that information that I just had to get out.
So I think music. I've kind of transferred that passion goes into writing now because I love to write it's hard, but it's my therapy. Like music used to playing music used to be my therapy. Now writing is my therapy because it allows me to get all that stuff out of me. So who knows? Maybe you've convinced me to do another book about.
Yeah, I think you should talk more about your appreciation again. For me, it was really enjoyable to read what you had to say about music, about listening to the music, about the songs that meant something to you, the movies that meant something to you. It's a part of this complex picture of who you are and it brings you to life. And I think a lot of people are going to take away a lot of things from that from your writing.
Well, thank you. I appreciate that. Yeah. I got some ideas about a second book. I just got to figure out get it going. I think once I started, I think it'll write itself for the most part, and then the editing is going to suck. And I've gotten tons of stories from the second trip, and this is full circle because I know you like funny stories and just stupid shit. And you know me, I'm just an idiot. So we're in Lake Tahoe. I'll try to make this really quick, but it was super funny. We're in Lake Tahoe. We found this little motel that was just perfect. It was like something out of a Stephen King book, just kind of creepy hotel, but it was super comfortable, and we loved it. So we decided, let's just take the whole day off the next day and enjoy just hanging out, not riding the bike, and not just do nothing all day off. So that being said, there's a Mexican restaurant right up the street. And since we didn't have to do anything the next day, me and my friend Bill and Mark and my brother Brian, we go to this Mexican restaurant at like 10:00 at night.
We go four margaritas deeper each. So we're four margaritas in. So we're kind of tying a tying one on. I get the bright idea to make a movie spoof. So we thought, what would be super funny? It's like two in the morning, pitch dark. Lake Tahoe is all shut down. Everybody's in bed, but our four drunk asses are out in the middle of the street. So I'm like, let's do the scene from old school where Will Ferrell streaks, and he gets super excited, and he's like, let's go streaking, and nobody goes with him. And he's just running down the middle of the street fucking naked. So I ripped all my clothes off. My brother films me streaking down the middle of Lake Tahoe, and the video is hilarious. We still had fun doing movie spoofs on that, but, yeah, that was one of my funnier moments on that trip because it was just ridiculously drunk stupidity. I'm almost 55 years old, and here I am ripping my clothes off and running naked down the middle of Lake Tahoe.
Frank the tank.
The tank. But I thought you get a kick out of that story. I thought of that this morning, and I was like, I got to tell you that on your show.
That'S a great story. Hopefully you didn't. Did you run into anybody while running down the road?
No. We just filmed it and took about 30 seconds, and the video came out really funny. It's not like it's not X rated, but you can definitely tell I'm running down the street with no clothes on.
That's awesome. From the back. Any White Castle on the second trip?
No, but I did have to hit my BW three s a couple of times because I absolutely love that's. My favorite BWS. And so every time we went to a bigger city like Provo, Utah, that's just south of Salt Lake City, the first thing I would do is look up the local BW threes, and I made the whole team eat BW three so much in the first half of the trip. That the second half of the trip, everybody refused to go. My wife included. She's like, I've had enough. I'm not doing B Dubs anymore, but we don't have one where I live, so it's like White Castles. They're not available here. So when I get a chance, I hammer down some sliders.
Awesome. I think that's a perfect ending to the podcast. We're going to go with that awesome story before we close out here. Steve, how can people reach out to you? How can people connect and learn more about you?
Super easy. Now with the nonprofit, you can go to our website on thevertigo.org all one word. Excuse me, Facebook is maniers on the Vertigo. Then you can follow me there on Facebook. Instagram is just on the Vertigo. All lower case. All one word, instant message me from there. If you're on Facebook, I Messenger a lot of people. That's how I keep in contact. And I share videos and discussions on Facebook Messenger, mostly because it's the easiest and Instagram message. But Facebook, you go on Facebook and find Veneers on the Vertigo. You can contact me just by typing me a message. And I'm always up for hearing other people's stories and where they're at with their lives and stuff like that. That matters to me.
I'm so happy for all the success. I'm excited to see what 2022 is going to bring for you. And just thank you for doing the work. Thank you for putting yourself out there. And thank you for being you.
Thank you. I appreciate it. I just love hanging out with you. So real quick. The book is on Amazon. It's called on the Vertigo, One Sick Man's Journey to make a difference. You can just click and buy it from any of my social media or just go to Amazon, type in on the Vertigo. Hit search and you'll find my book. And real quick, for a cheap plug, we just released a special color hardback edition. So all the pictures are in color and it's a hardback copy of that same book. But like the one you have, the pictures are black and white because we had the same cost. So now we release a hardback copy if anybody's interested in that, that can be found on Amazon. And you can also get the Kindle version, which has color pictures on Amazon.
Thank you. Are there more pictures in the hardback version or is it the same pictures just in color? Better resolution.
It will be all the same things. It will be identical. They're just a color version.
Cool.
Which I think it's just better looking if you got the color version.
No, it is and it brings it to life and the pictures it was cool that you included the pictures at the end of every chapter and then at the end of the book there's the rest of the photo. So I'm sure seeing them in color is just going to bring that imagery and what you went through to life more vividly.
Yeah I just really wanted people to feel like they were on the trip and so I just tried to put pictures that mattered that kind of put you in my seat for that day or whatever. Yeah the pictures were really important that I picked pictures and we put pictures in it because I think that adds a lot to it.
Absolutely fantastic. I look forward to having you back again, Steve. And thanks, as always for the time and the generosity and for being here.
Okay. I want to be your 1st 3rd time guest.
That's my goal. We'll make it happen.
That's okay. Alright. Love you, brother.
Love you too, Steve.