Steve Schwier
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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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S01E22 Steve Schwier.mp3 - powered by Happy Scribe
Welcome to the Enabled Disabled podcast. I'm your host, Gustavo Serafini. I was born with a rare physical disability called Pfft. My journey has been about selfacceptance persistence and adaptation. On the show, we'll explore how people experience disability, how the stories we tell ourselves can both enable and disable, how vulnerability is a foundation for strength, and why people with disabilities can contribute more than we imagine. I hope that leaders, companies, clinicians, families and friends will better understand our capacity to contribute to the world and help enable us to improve it.
Even Schwear is an author, activists, and cast member of the new documentary Life Rebalance Chronicles. Steve has been years disease of a similar disorder that causes vertigo business 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 them back for a second episode. If you're enjoying the podcast, I have some good news. We are finally starting a newsletter about time, right? The goal is to give you all meaningful updates and share my thoughts about the issues I'm working through. And what do I want to explore next?
You can go to www enable Disable com. Sign up. Thank you, Steve. Welcome to the show. It's an honor to meet you and thank you for taking the time.
Thank you, Gustavo. It's all my privilege. It's my privilege. I think your show is great, and I think it's doing a big world difference for anybody that's disabled, so I appreciate it.
Thank you for saying that, Steve. That means a lot. It's a lot of hard work, and it's always you. It hits home in the heart whenever people say that. So thank you.
When anybody does something like what you're doing, we understand how much energy it takes and the effort you put into it. So much appreciated.
Absolutely. So I'd like to start just tell me a little bit about yourself. Let's say before before what you're going through now. And just like, what were you like as a kid? What was it like growing up? Like any experiences that stand out to you that we can kind of come back to later, that maybe were some helped you or were formative and are pushing you along now? Yeah.
I grew up in a suburb of Columbus, Ohio. Normal suburban upbringing. You go to the mall, you play video games, you hang out with your friends, trade baseball, cars on the sidewalk is very normal. Elementary, middle school, high school upbringing, way into sports. I love sports. So I played every sport I could get a hold of. And I loved music. I started playing music in grade, and I played the bass guitar and learn that. And so my life going forward was sports and music, you know? And I play soccer through high school.
I played baseball. I played basketball. And it was a big part. I was very athletic growing up, and I was very talented, music wise. And those were the two things that kind of carried on to my adult life, along with working and getting married and have a family. I still love sports. I still love music. Yeah. Normal upbringing, two brothers, one sister, and my parents were great. Got married, moved to Colorado in 1998 and started a family of my own. And my wife, Emily, and I started raising our child.
And his name's Nolan. He's 19 years old now getting ready to go off to College. But about nine years ago, I was diagnosed with a disability, and it changed everything. It changed our entire lives. And now my family has to work around my disability. So that's my upbringing a nutshell. Very normal sports, music. You know, I love heavy metal.
Awesome. Can you tell me? Can you tell me? So I've always been big into sports, too. I was born with my disability, and work was always a big part of my life. Just basketball, tennis, swimming.
Herbal.
Yes. Tetherball. Exactly. When you were out of this diagnosis, like, happen you're diagnosed with a disability. This was just something that, like, suddenly happened or just gradually came into being.
No, it was very sudden. I drove heavy equipment for a living. Bulldozers, motor, graders, loaders. I plowed snow. I live in the Rocky Mountains. So I was I'm a snowplow driver. I was and a very blue collar. And I worked very hard to provide for my family. And on the side, I was a musician. I played in bar band since high school. So as I grow older, I was still playing music at night and stuff like that. But one day in 2012, my ear just started ringing.
My left ear just started ringing. And it was insane insanity. I was like, What's going on? I've been to concerts. I've been a musician, so I know what it's like to have your earring. But this was a whole new level where it was just devastatingly distracting. So that happened for about a year, and the ringing never went away. And in that year, I visited my general physician and he couldn't diagnose me. Gave me the number for an ENT, an ear, nose and throat doctor. I went and saw him.
He's like, well, you have severe tenets, which is ringing in your ear. And I was like, okay, well, what do we do to fix it? And he's like, you can't fix it. And that's when I first started getting worried. So when that happened, I just had to work around it, and it was so distracting. The problem was a year after that, I started getting the symptoms for my real disability, which was I started getting vertigo, a tax and constant dizziness and constant nausea, balance issues. Hyper choses, which is sensitivity to sound, sensitivity to light.
I was exhausted all the time. I had insomnia barometric drops. When storms came through the mountains would make my ears hurt. And I was like, okay, something more is going on than just a ringing in the ear. After seeing nine specialists over three years, I was diagnosed with Meniere's disease, which is a vestibular, this order. That's a disability. And that's my story in a nutshell. So it took three years to get a diagnosis. And when I got my diagnosis, I was like, how could my one year affect my life so bad and just wreck my life?
And that meant my relationships. That meant how I looked at myself. I worked for five years very, very sick with dizzy nausea, getting vertigo attacks, blurred vision, my spatial net recognition. I lost it. And it became very, very, very serious. And then I started really worrying. After my specialist, my ten specialist, three years later in 2015, said, but you definitely have Meniere's disease, which is a disability. And it was hard for me to wrap my head around. Like, I couldn't believe that I was so sick that I had a disability.
It didn't make sense. I was healthy, providing for my family, loving sports, loving, music loving wrestling with my son, throwing ball with my son. And that all disappeared in a matter of a couple years. And I found myself stuck in bed, you know, not even be able to I couldn't do anything. And it was very difficult, very difficult.
What were some of the things that you that helped you move through that? Like, not necessarily. Like, I know that Kim has this beautiful idea of unfixed. Like, right. People with disabilities or chronic conditions, there's nothing we can improve and grow and learn, but we're not. We're unfixed. There's nothing that's ever going to quote, unquote fix us, right?
Yeah.
But in that experience, like, what were some of the things that you did or thought about or that were helpful to help to help move you forward?
It took years. I worked for about five years with my disability so I could no longer work. And I was getting sicker and sicker. And when you have a vertigo attack, when you're plowing snow in the mountains, that's not a good thing. You know, you're incapacitated for eight to 24 hours. This was happening more and more regularly. So I lost my job that paid my bills and ended up having to take other jobs that paid less money. But I still wanted to do what I could to keep moving forward until it got to the point where my specialist who takes care of me now is just like, your quality of life is zero if you keep working, because all your energy is going to go into that, and you'll have no quality of life outside of that.
So it was humiliating. It was embarrassing. But I had to go on to disability, which was just it was a kick in the gut. It was just rough. That being said, the tough part was grieving the loss of all those things. I lost sports. My balance is so bad. I can't kick a soccer ball anymore. I can't throw a baseball. I can't run. I can't jog music. I lost that because I lost all the hearing in my left ear and the ringing in my ear. I couldn't hear music.
Correct. So I lost that. I lost riding motorcycles because it became too dangerous to ride a motorcycle when you have no balance. And so all the things that I loved just disappeared within a year or two. And so the process I had to work through was grieving all those losses. I had to actually grieve like I lost a loved one. I had to grieve the fact that I can't play music anymore. I had to quit my band. I had to quit play music. And I haven't played music in eight years now.
You know, I can't play sports anymore. I watch sports a lot, but I can't play them anymore. And I had to grieve that I had to grieve all these losses that my disability stole from me. And so a lot of emotional stuff comes in at that point. You know, I was anxious. I was stressed. I had tons of guilt because I wasn't the same husband I was three years ago to my wife. And I wasn't the same dad. And it was heartbreaking. And so I think the coming back from the emotional stuff was the big battle.
You know, I had to learn how to manage my physical stuff. And eventually I did. But I still have leftover stuff. With the emotional impact of how this has affected my life, my self esteem dropped. I felt worthless. I felt like I said, guilt was a huge issue, guilt that I can't be the person that I thought I was going to be and what people expected me to be. And I started letting people down because I couldn't do things. And so I had to get over that guilt.
And so it was like the graving process. You go through anger, you go through disappointment. You go through frustration until you get to the point where you come to acceptance, and then you come to forgiveness. And I had to forgive myself. And once I got to that point, then I could start rebuilding in a positive way. But it took years. It took eight years to go from point A to point B.
That's a long journey. That's a long journey, and definitely it's. So when you got to that point of acceptance and forgiveness, where did that? Like, emotionally, how did you. Was there a turning point there? I know it's a lot of emotional labor, but I'm asking for a reason, like, because I don't know that I've fully gotten there myself. Right. I've always felt like I have to overcompensate. I always felt like I have to be the smarter person in the room, be the more prepared person in the room, because I'm compensating for something that other people already have.
No, you're so right. You're so right. You feel like you're behind the ball all the time now. And so we strive to catch up. I always feel like I'm three steps behind everybody that I deal with. They're in a conversation. I feel like I'm trying to catch up. And that's different than what I used to be. I used to be the person that would start conversations. I was the person that would reach out to people. And then I became the person that I just kind of felt like I was tagging along and not quite pulling my weight.
And so it was very difficult. It was very difficult. My turning point was I had a couple. I had a few procedures on my ear that helped me greatly as far as controlling my vertigo. And that was my big issue. I was having vertigo attack three or four times a week, and that is incapacitating. I'd be in bed for a day or two with vertigo. Then a day or two, it would take the recover. Then I'd go back into attack, then I go into recovery. And for two years, I pretty much couldn't get out of bed.
Once I went on to disability, I just got so sick. So having these three procedures allowed me to gain my life where I could actually get out of bed in the morning and could actually get up and do things. And once I started being able to do that, then I realized how many people were in my position. And it's an invisible illness. People don't look at me and say, wow, you're sick. You know, they look at me and say, wow, you're fine. So you must be good today.
And I'm like, no, I'm still sick. I'm just getting to the point. I can manage my symptoms enough to have a regular life somewhat. And once that happened, I realized that there was a big gap in the world of the tibular disabilities that was left empty because we suffer by ourselves. We lay in bed while our spouses go to work. Now we lay in bed while our children go to school. And that's a very isolating, lonely, very invisible illness that nobody really sees except us. And I realized in my community that there wasn't anyone that was really speaking out.
And I get that because I couldn't for eight years. But I finally got to a point where I was like, you know what? Maybe I could be a voice that could speak for the people that live like me. And I got motivated to actually get off my couch and try to do something positive for our community.
Okay. That's thank you for doing that. I'm not a direct part of your community, but I am. I feel that I feel that I feel your you're just authentic. You're saying it like it is, and you're not hiding it. And that's beautiful. I'm just I'm soaking it in the isolation, the feeling and just having the courage to come out and say I'm going to do something about it. I'm going to try to help somebody else through it, because hopefully the next person doesn't take you three years to get diagnosed, for starters.
Right.
Correct.
And they have a set of experiences that they can say, I'm not the only person going through this.
Yeah. And I'm no hero. I'm not I'm not ban standing. I just figured, you know, maybe if I went out, you know, I'm not afraid to be sick anymore, and I'm not afraid to be disabled. And that was really hard. So I was ashamed. I was embarrassed. I felt guilty. And once I cross that bridge, I realize I don't have to be scared anymore, you know? And I don't advocate everybody with a vestibular disorder or any disability to do something that's beyond what they can do. I don't I'm not an advocate for exercise.
If you have a disability and you do rehab, you have to do that. But I don't believe I believe everybody with a disability has to take their own road, and it has to be a road they're comfortable with. And I found a road that I was comfortable with. And it just so happened that people paid attention when I started getting into the public eye a little bit more. And it gave hope. And that was my whole goal. It wasn't to motivate people to go out and do what I'm doing.
It was to motivate people to do something that gives them hope. You know, if you're a painter and you lost painting, if you can get back to painting, it might maybe that'll help. It's just simple things. Simple things in life when you have a disability are huge.
Yes. Absolutely. I wasn't I recognized that. It's not about, you know, that that inspirational. Hero. That's not what we're here to do. That's not what we're trying to do. But we are trying to inspire people in the right way, like in the concrete, empower somebody else to take control of their lives and figure it out for themselves and know that they're not alone in a perfect world.
Neither one of us would be in these seats in a perfect world. But it's not a perfect world. So we have to deal with what we're handed. And I try to do it with Grace and dignity.
And I think have you started I'm imagining you have, but I'm sure that coming out with this, you know, this goal and speaking out, he kind of help people that you are starting to see. You're seeing the world differently. You're seeing the unique perspective that you have that only you have right. There's ways that you're communicating and inspiring people that only you are capable of doing. I can't be you. You can't be me. Are you recognizing those things?
Correct? Correct. And the problem that I have is that the tibular disabilities, first of all, they're invisible. And to tell you the truth, we're kind of the bottom feeders of the disabled community. We're like, you know, it's. You know, I heard your story, and I feel for everybody with a disability, but for people with vestibular disabilities, it's our ear. So if you see someone out in public with a prosthetic on, you have a box to put that in, you're like, okay, that person is disabled and they had to go through a fight.
If you see someone in a wheelchair, you're like, that person is disabled. But if you see someone with a vestibular disorder, we look fine. And so nobody has a box to put us in. And so we kind of get kicked to the curb. As far as awareness, and awareness is my number one goal, because awareness brings funding, and I'm not competing with the big disabilities. If you have cancer, everybody's heard of it. If you have Ms, everybody's heard of it. If you have a vestibular disorder, like, if I say a Meder's disease and it's a disability, nobody has a box to put that in.
So it's very difficult to shine a light on something that is just kind of hidden in society. You know, it's not a visual thing that people see. It's something that we suffer with silently. We suffer every day greatly. We spend days in our beds, you know, alone and isolated. Then we go out in public and people think we're healthy and we're fine. It's not the case. So shedding light on the tibular disabilities has been very difficult to do. But I'm up for the challenge. It's like, who else is going to do it?
And if I'm one guy trying to do it, maybe I can make a small difference in the way people view the tibular disabilities, because it's a huge disability. But I can't it's not seeing outright. So it's like you said, I'm not in your shoes, and I know your story, and you're not my shoes. And you're learning my story. And all we can do is support each other and try to help the world. Just give us a little bit of Grace. And if we say we have a disability, believe us, believe us.
You know, it's it's interesting. And it's a little bit like my disability. Obviously, I was never able to hide, but I dreamed when I was 1317, et cetera, like, Boy, wouldn't it be great if I could hide it. And nobody knew if I could just have those moments.
Right. Of just one day. One day, one day.
Right. Just to be able to, you know, and to hear your story. And Kim story, like, this is my first exposure to it. It's like there's a whole other side to that invisibility that. I I never thought I couldn't conceive it because I wasn't living in I wasn't experiencing it. So I think what we have to do or what we should be doing is people. Is there's so much judgment? There's so much, like you said, putting people into boxes. I want to learn. I want to feel and have my curiosity guide me to say, like, what is your experience like?
And what can I take away from this? How can I help? Right. It's about it's about that open mindedness you are going through this. I can't see it, but it's still just as real and just as impactful in your life.
Yeah. Yeah. Sometimes I wish people could see my disability, but then trying, but you don't want, you know, you wish people wouldn't see yours, but I kind of wish people would see mine, because I've basically to put it in layman's terms so that people can understand it's not medically correct. I'm not a doctor, but I basically had my left ear amputated from the inside out. My ears still on there, but the insides have been worked on to where I have. I'm an amputee, but when I'm in a store, I'm not wearing a prosthetic leg.
Like, in your situation, you wish people couldn't see that disability. But for me, it's kind of like, you know, maybe if I looked more sick or more disabled, then I could get the compassion I deserve and get the empathy and the sympathy that I need to be able to get through my day. But I don't get that. So it's kind of a it's a Catch 22 with both of us. You always wish for what you don't have, but that's the card I've been dealt and you're playing a good hand.
So tell me about what have you been doing in order to promote awareness and get people to understand the tibular conditions? Like, I know you wrote a book. Tell us about the book.
Well, the book wasn't really in the cards to say if I just felt the right hand. But last September, last August, I decided after being on my couch for three years, I'd get up and ride my bike from Denver, Colorado, to Columbus, Ohio, where I grew up on 400 miles. And I document I would document it. And I figured with the sort of balance issues I have, I use a cane. Sometimes when I don't use a cane, I look like a drunk guy. I wobble and fall into things.
But I figured, you know, if I could ride a bike 1400 miles with my kind of condition, it might raise some eyebrows, and it did. I was hoping to maybe get 30 to 50 people to be interested. And I was hoping to raise about $500 for research to help us out in the Vestibular community with the miners disease. But it just blew up. I mean, within the month, it took me a month to ride 1400 miles. And by the end of the month, we had over 3000 people following us on social media.
We had donations flowing in, and we raised over $10,000 for research and awareness. And it started this crazy snowball rolling down the Hill that kept getting bigger and bigger. And I was more and more recognized for what I was doing. And it I really didn't want it. I wanted to do my trip and park my bike and unplug and just go back to my couch. But there is such an outpouring of people contacting me saying, I watched your trip, and I'm inspired, and that made me feel good.
And it also made me feel like, okay, I can't stop this now. I need to take the next step. So the next step was people were like, we want to know more about you. So then my brother Dave, who is my support, my main support. We co authored a book together, and it's been doing great, and it just flowed from the trip. It's a memoir about our bike trip and a little bit about my background. And it gives Dave's angle on him viewing me with my disease as a family member, which is huge because, you know, disability affects your family dynamics in a big way on what you can do and what you can't do.
And a book was a success, and it's still a success. But now I was just like, well, what's next? And so we have another bike trip coming up this September. So September 1, we're gonna do another 1400 miles, which I'm an idiot for even thinking about doing, because the first trip damn near killed me. So this one, I'm just like, oh, my gosh, I know what I'm getting into this time, but I think the community that supports me would be great. Now, the difference is that trip was specifically followed by miners and Vestibular people.
And I think my story and I think my book I wanted to broaden beyond that into the disability community, like the complete disability community, because I think it will inspire them. And I'm hoping to even go further than that and go outside into what I would technically call the regular people, the healthy community and let them see my story and share my story with them so that they can see what we go through with disabilities.
That's awesome. What did it feel like, getting on the bike for the first time?
Horrible, exciting, rejuvenating, scared to death. I just went for it. I was just like, I'm not an avid cyclist, and I'm not an avid exercises. I don't get up and work out. I don't ride a bike all the time. I was never a professional bike racer. I rode my bike once a year, if that, but I just thought it would be a good platform. So I figured this would be a platform that would attract attention. And boy, it did. It attracted a lot of attention.
That's awesome. Were you journaling as you rode the bike just because or after you got back from the trip, you actually started the writing process?
No, I definitely didn't Journal every day because I would get done riding my bike for 8 hours to 12 hours a day. I'd be so wiped out and I would do all my energy went into the social media aspect, trying to comment back to people who commented me and touched base with the people who were following the trip. I didn't Journal one night. I didn't write anything down. About a month after my trip, I sat down just to write out my thoughts, and I didn't plan on a book.
I just wanted to write down a paragraph of what did I learn? If anything, for me, it was personally for me. I was like, what did I get from this? So I wrote a paragraph and I kept writing. And 8 hours later I had five chapters of a book written. And I'm like, oh my gosh, this could be a book. So I called my brother Dave, who drove the support van. I said, I think we got a book here. So would you be into helping me write this book and coauthor with me?
And he was like, Absolutely. So it was an afterthought. And I'm kind of glad if I would have been thinking about writing the book during the trip, I think it would have changed what I did on the trip, and I needed to do the trip a certain way. And then afterwards I just had to recollect and write the book from what I remembered in my conversations. And it was very fresh at that time. I was only a month off the trip, so I remembered everything because it was so real in my face.
It was raw. It was gritty. It was the pain. It was the suffering. It was the good times, the bad times. And my battle was just in my face. And so I was like, I'm going to bang this thing out. So I wrote the book in three months and my brother went back and added his thoughts in certain parts. And I'm very proud of what we came up with. I.
Ordered it today so I can't wait to read it and have have you back on the show to talk more about it. But what was the what was the most? Was there a highlight of the trip? Good or batter? Is there a moment when you said, you know what this is? This is amazing. I'm glad I did this. Or is it something that you could only reflect on afterwards.
Not once that I think this is amazing. And I'm glad I did it until I finished when I pulled into the finish line in Columbus, Ohio, and I went 400 miles through thick and thin. The good, the bad and the ugly. I didn't take a deep breath and enjoy it until I finally got off my bike at the very end, because so many people were following it by then, and so many people were donating. I felt an extreme pressure that I have to succeed. And so when you have that pressure, you don't really enjoy it.
You're just like, I have to go to another mile. I have to get to the next city. I have to get up tomorrow and do this again. And so I put a ton of pressure on myself, maybe unneeded. But what else do you do? That's just the way it is when you're sick every day. And I'm like, I don't want to do this anymore. I would have to be like, I have to do this because I took this up and people are donating and following. So it's up to me to make this to get to the finish.
Then once I got to the finish, it was just weight off my shoulders. I sat down and just really I was really proud of what we as a team accomplished, because it wasn't just me. We had a team of people that supported me.
So it sounds a little bit like maybe this is a bad analogy, but the way you're describing it, it feels like like an athlete when you're in that competition, right? Or you're running that marathon and you're doing that work, you're so focused on just doing the work and being in that moment, right. And just almost like competing that you can't you don't have time to just stop and look around.
You don't smell the roses.
You don't smell the residence until after it's done.
Yeah, I didn't smell the roses. Africa was done, but there were good highlights on the trip. My brother and I became very close. We were close to begin with, but I with an invisible illness and specifically of a tibular disorder. People only see me on my good days, so they see me when I can get out of bed, and they see me when I can go to the store or I can go hang out with friends at a restaurant. And those are very rare things. So people only see me in those good times.
This trip, my whole purpose was to pull the curtain back and show the world what it looks like to have a vestibular disability every single day, minute by minute. It's like they you know, there was times, had emotional breakdowns. I had vertigo. I had vertigo attack on the trip. And I told my brother, I want you to video tape every single thing that happens, even if it's bad, even if it's ugly, you know? Well, video the good things, but I also want the tough stuff. I want the struggles and the fight and the battle omen to be put out there, too, because if not, I wouldn't be being my real self.
And it wouldn't bring awareness, because people will be like, oh, he's having a great time riding his bike. It wasn't a great time riding my bike most of the time, but I wanted people to see that that it's a struggle. But I was willing to overcome the obstacles that were thrown in my way each and every day. And hopefully, that would give hope to a lot of people.
That's amazing. What were your brother some of your brothers, like, thought about it. Like, what did he learn that he didn't know before in this incredible bonding experience?
Well, the first three days, you wanted to pull me off my bike. After 20 miles every day, he's just like, you look like crap. You're struggling. You're crying. You're weeping. You're laying on the side of the road. So I'm gonna stop you. And I'm like, no, this is my life. This is how I get up in the morning and to go to the grocery store. I cry for 20 minutes before I have to go to the store. I weep for my past life. There's all these things going on in your head that affect my thought process.
But I was motivated to make it happen, and I knew I could. And so for him, it took us about three to four days to build a trust where he could trust me. That okay. You look like, like, you're dying. But I'm going to trust that you can keep riding your bike the next 80 miles, and I'm going to watch you out for your back. But I'm going to allow you to do that if you say you can. And that was huge, because him, along with the other team members, which was a friend of mine named Bill and a friend of mine named Bryce, like, for the first four days, every day, 20 miles in, they were like, we got to pull him off his bike.
He's gonna die. He looks horrible. And I'm like, no, this is just. I'm always horrible. You're just seeing it for the first time. This is the first time you've got to see me fight my disease, and I'm fighting it. But I'm still gonna ride my bike. And so it took three or four days to build a trust to where he trusted me. Then if I said I could ride, I could ride. And then there were days where I said, I'm done. I can't ride anymore. I can't go any further today.
Come and pick me up. And he would. And so the first four days were crucial, and we just had to learn how to trust what each of us was saying. He'd give me his concerns, and I would just override him and say, I'm good to go. Let me go. Let me go. And through doing that for four days, he realized, okay, this is what it's like. The battle of Tibular disorder. It's ugly. It's not pretty. It's not fun. You overcome what's in front of you. And my goal of riding the bike was I wanted to show people in a physical way that this invisible illness is actually a physical, real challenge.
Now, you can see what I battle, and you can see it in real life, and you can see it happening. It's not something I'm describing to you. That's this aura of weirdness. I'm dizzy. I'm nauseous. Well, I don't know what that means. Well, now they got to see it, and I wanted them to see it. And so my brother really learned a lot about what it was like for me to live with my disease. And we ended up bonding over that really, really well, by the end of the trip.
That's amazing. Beautiful. I have. I think you pointed out something that I think I've taken for granted with close friends. And my brother, right. Is we.
Trust each other the same thing.
If I'm struggling to do something physical, he won't help me unless I ask for help. Right. Because he knows he knows that you're going to fight.
You're going to fight the fight.
It exactly. So that relationship, that trust is there. And I tell the people who are close to me the same thing. If I need help with something, I'll ask for it. It may look really difficult, or it may look awkward, or whatever the case, just let me do it. If I need something, I'll ask exactly.
When you get that trust, it's huge.
It's huge as the people are just letting you. They're letting you be. They're respecting your way of doing this.
And it was the only way for my battle to be seen in real time. You know? It's like I didn't have a smile on my face, you know? It wasn't all roses, rainbows, and unicorns was dirt. It was. But it was tears. It was sweat. It was breakdowns. It was tough. But that's what I wanted people to see. So, like, you. You want with my disability, I want people to trust me, that I can work my way through my disease. I want their support, and I want their sympathy.
But I don't want to pound in the back. I don't want my handheld. I don't want accolades for something I don't deserve, you know, let me live my disability. And how about you love me through it? And if we can do that, then we're going to find common ground.
Absolutely. Absolutely. That's amazing. And I don't know. I don't want to romance the size it Steve, but like, the blood and the sweat and the tears, then the shitty part of everything. It's just those contrast to me of, like, the good and the bad are what part of what makes life so interesting, and so I can appreciate it and be grateful for it, because we are all I just think, you know, non disabled people do a better job of hiding it, but there's still messy, ugly, you know, bullshit and insecurities and pain that everybody goes through.
It's good. That that's why it's so important. Like, we have this unique perspective where we can come out and say, look, it's not good. It's not bad. It's just our lives. Let's figure out how to connect with each other and love each other through it and be better for it. But, like, the hiding part is what kills me with other people.
You're so right. And, you know, we have I have an invisible disability. You have a physical disability, but there's addiction. There's sexual abuse, there's broken families, there's physical abuse. I mean, everybody is carrying something that Burns them down. But for me, it's like, if I can just show in my world, me overcoming my obstacles, maybe it'll help. Everyone should go worldwide because there's not a person on the planet that has easy times. You know, if you have easy times, then like you said, you're lying to yourself or you're being fake.
But I have no problem saying I'm a weak person and I cry. I cry every day. You know, I grieve. I'm in pain. I suffer. I used to be afraid to show that because I didn't want people to look at me like he's weak. But you know what? It's not a bad thing to be weak.
It's not what you think is weak. It may not actually be weak, right? In my business, I met with we serve, like, very economically successful people, right? In the home, technology, space. And I know I remember meeting a new client for the first time, and he was very older couple, super successful. Like you would think the world is there oyster, and everything is great. Ten minutes into the conversation of meeting them, they're telling me about how inspiring I am because they've lost two children. And everybody assumes just because they're successful, that life is just a bed of roses and it's not.
And to see them share that pain with me after having just met me, it transforms you like it changes. It makes you just appreciate what it is that we are able to show people and what we can bring to the table.
That brings up a good point, because they could be going through a divorce. They could be suffering money wise. Maybe they're bankrupt, but they're not going to show that. But if they do, then I think that's a strength, because you don't get empathy and sympathy and compassion if you're not real. And it's so important. And one of the things about my trip, it wasn't the bike riding, the weather, the geography that I like the most. The thing that I actually look at is my positive was meeting people and just talking with them because I can hand out pamphlets that say this is my disability all day long and they'll throw in the trash or they'll skim it and be like, That's just another weird justknow about.
But when I actually had conversations and met people heart to heart, they could see how important this was to me. And then I drew them out, too, and they shared their stories with me. And I spent just as much time listening to other people's stories as telling them mine, because that's if you can start a conversation, if you can get a dialogue going, that's where change happens. It's not throwing out stuff on the Internet of information. It's not medical journals. It's not pamphlets. I think those are important.
But the real change has to be grassroots. And that's meeting face to face with people and opening up a dialogue that matters that touches people to where they take that home. And I have so many stories from my trip that I got to take home.
Absolutely. You're totally right. That change of perception, right? That really hit somebody in their core is why I'm doing this podcast. That's the fundamental reason that's the fundamental goal is like, let's change somebody's heart. Let's change how they think about, about life, about themselves, about all of us didn't gather on this planet.
But you have to give a piece of yourself to get that. And once it doesn't become scary anymore, it becomes a blessing. You know, all the other shit doesn't matter. It just matters that we're connecting as people, and then we can support each other because we know each other's stories and we know each other, you know, we know each other's hearts.
Can you talk a little bit? Can you give us a preview? I know it's going to release soon. The project that you worked on with Kim. What that was like. I've seen the The Unfixed documentary series, which is amazing, but I'm so curious. Like, what was that experience? Like, how did that get started? What made you say yes to that?
Well, first of all, that was kind of like the book. It wasn't in my box yet. And Kimberly got a hold of me, and she's like, we need someone with Meniere's disease to be a part of this documentary. And, of course, on board immediately. Getting Kimberly is hands down, one of the funniest people I've ever met, the most compassionate, the most caring. But she's funny. She's funny as hell. She just cracks me up and she supports the cast. Like, where her little ducklings? It's amazing how just funny and carrying this woman is.
And we hit it off right away. And so when I had my first interview for the documentary within 30 seconds, I was like, I got to be a part of this because this is special. Another thing that's cool is The Unfixed documentary series deals with disabilities and people struggling with it. And this is a documentary that is in collaboration with Beta, the Vestibular source Association. So they're narrowing that disability down to just dissimilar disorders. So for me, it's exciting because it's going to take all of this unseen stuff that we deal with a vestibular disability and hopefully shed some light on it.
And it's fantastic. It's tough. I mean, it's soul searching. It's not like answering a questionnaire. You got to go deep and think hard about what you want to say, because this is your one chance to be heard. And I feel like I'm being heard through this documentary, and I can't wait for it to come out. I'm super excited about it. I just wish every story could be heard. That's the thing that bums me out. All my story is going to be heard next month, and it's going to be broadcast on this documentary along with eight other people with tibular disorders.
But there's so many people with vestibular disabilities that are alone, isolated. They feel left out. And I'm hoping it gives them hope. But I just really wish everyone's story could be heard. That would be my dream. It's not going to happen. But I wish everybody could be heard. The way Kimberly is allowing me to be heard because it's so cool. It's so freeing.
You is the I can't wait to see it. Just like, my curiosity, right. Like, is it something where she would ask you questions to think about? And then you would get on camera, or were you able to interact with the other people on the show as well? Like, how is it going to work?
No, it's because a COVID, you know, in a normal world, they send a camera crew out to my house and interview me and whatever, or they get all this together. But that's impossible, because all nine of us are all around the world. So what we do is we get a topic that we need to give our thoughts on. And so we get a topic like How's your disability affect your mind. And then I get six to seven minutes and I make a video just like, I'm talking to you on the phone.
You're looking at me, and I record it, and all nine of us do that. We just bombard Kimberly with all this information. And then she's magic, and she takes it, and she edits it into six different documentaries, which will cover six different topics. So we've had six topics, and we have one left to go, which will do at the end of this month. But I haven't met the other cast members yet. Hopefully someday I will, because we've all become kind of a big family from this, with Kimberly being the Mama duck.
So you get to meet them on Zoom, at least fright and talk and have a good time or just just listen to.
Not yet. But one thing that's coming up down the pipe is once the first episode or two is released. We're going to be doing live Facebook chats with three of us at a time so that we can all get our face time, and it will be a live Zoom where people can ask us questions. And that will be the first time. I probably actually get to interact with the other cast members, but the interesting thing is that it hasn't been that big of a disconnect between us because we all have nine different dissimilar disabilities.
But the things we talk about, we finish each other's sentences, and we could talk about the exact same thing. When I watch the teasers that Kimberly's release, it's amazing. So I'm like, that's exactly what I would say. That's exactly what I would say. That's exactly how I feel. That's what I think. So it's been very interesting because we're so much alike that we already feel knitted together, even though we haven't talked personally. So it's been an interesting process, and it's been exciting. I'm hoping it goes big.
I I think it could change a lot of stuff for people with our diseases and disabilities, along with people seeing it for the first time being like, wow, now I kind of get it.
With that docuseries. I agree that Kim and her team have a way of humanizing and just bringing, like, I felt connected to everybody as I was listening to the show in a way that I didn't expect is like, I don't know you, but you feel like you feel so familiar to me. I feel like, like, I should like, I've known you a long time, so I wonder if she does that on purpose of, like, not not mixing you all together in one forum or if there's something to experiment with there in the future where she does something where everybody together.
I don't know. She's a magician. When it comes to editing and the stuff that she sent me, I'm just amazed. It's mind blowing and just, like, talking to you. We have two completely different disabilities, but I feel a Brotherhood with you because I know that your life has not been easy, and I I don't know all the struggles you've been through, but I damn know you struggle and you have struggled. And so that gives us a kinship. And she kind of knows how to connect all that stuff so that people watching it will be like, oh, my gosh, I can relate to that.
You know, can you tell the audience what's the name of the series?
The series is called The Life Rebalanced Chronicles, and it's a six part docu series. It will be airing on August 10, will be the first episode, and it's airing on the Disorder Channel, which can be seen on Amazon and Roku. Then after a week, Amazon basically, Bob has said, we're going to do exclusive releases for the first week. And then after the first week, that episode will be going up on YouTube. Under Veda, the Vestibular Detours Association, YouTube and the Unfixed Media, which is Kimberly's production company.
So it will be released on August 10 originally the air once a week for six weeks.
That's awesome. Absolutely. I can't wait to see it. I think it's going to be I think it's going to have an incredible impact on a lot of people. And we're going to do our best to promote it to our audience, our people, our connections, because it's Super, super important. I have two more questions for you. If you have the time.
I've got the time.
I've started to ask this question offline, but I'm going to bring it online now for a few months now, because it's something that I thought about. How do you dream of yourself? How do you see yourself in your dreams?
Oh, my gosh. That's a tough one. I dream that I could be the best person I can be, and I fall short of that multiple times a day. But before my first bike trip, nobody knew who I was. I was just a blob out there in space, floating around in my sickness and my illness and my disability. Now that I've got a little bit of recognition, I'm dreaming a little bigger. Now. My brother and I are trying to start a nonprofit. We're going to do another trip in September.
I'm part of this docu series. I'm seeing that if I'm patient, that doors can open and I can maybe make a big difference. And that's something that three, four years ago, I just would have been like, I'm just going to dwindle away until I die, and this is what I have to do. And now I'm more excited about life, and I'm more excited about being a part of the world. You know, I pulled myself out of the world, isolated myself. I just associated myself along with my wife and my son.
There was years where I was disassociated, and I just felt so alone. And now I'm just, like, realizing that by people like you and Kimberly Shenema Goldrick, I could go on and on and on. John Ingram, these are all people that have come into my life because of what I've done. And so it's given me bigger dreams. It's like, okay, maybe I could ride a book, maybe I can go on another bike ride and not kill myself. Maybe I can do something that makes a difference.
And to me, giving someone else with a disability, hope is all I dream about. That's my biggest dream. I want people to wake up in the morning and not feel alone. That was a tough one. Gosala, he's busting my balls with that. All right. Give me your next question there, Chili.
Love the answer, though. That's a great answer. And I think that you're gonna I would imagine. I don't know. I'm looking forward to getting to know you more and and your family and a deepening this connection. But I would imagine that you are going to have the same impact having the same impact on your family, on your friends, on pretty much everyone you meet, because it's. I mean, that's the human dream on so many levels. How many books and songs and movies have been written about loneliness and feeling like no connection in the world?
Like you're just you're in your own bubble, right? I mean, that's the fundamental human need. It's huge.
It's huge. It's huge. Alright, show me another question.
I know we talked a little bit before we started recording about your sense of humor. I would think it would be interesting, especially since you have your fear levels are gone. Have you thought about stand up comedy? Have you thought about that? You and Kim?
No, no, but I'll tell you a funny story. If you want to hear do it. So about a year ago, I finally got my handicap placard for my car. So I'm driving. I park at a Target parking lot, a grocery store, Target. And I Park in the handicap spot. And it's only the second time I ever use my handicap placard. And I'm nervous because I get out of my car and I look fine. So I put my handicap placed in my car, I Park it in front of this target because if I have to walk really far, I can get dizzy and I have issues.
So I hop out of my car in this elderly lady, she had to be in her upper 60s, walked right up to me and she's like, What's your handicap? Why would you have this? Because you look fine. And I told her I have erectile dysfunction and she had no answer for it. She walked away with her tail between her legs and I was just like, okay, okay, I got this. Now I know what to do. I can be proud, you know? But I'm gonna be stupid.
If you're gonna be stupid and question my disability, I'm gonna be stupid and give you a stupid answer. So that's the kind of humor that's the humor I have. But no, no stand up comedy. But Kimberly, when if you put our text messages online, they probably get a million hits because they're just stupid and silly. And I just love talking to her.
Awesome.
I'm glad that we're becoming connected because this will be years and years of connection. Just like all the other people I've met. This is important. It's important to me.
It's important to me. To Steve. I'm super grateful at the time. I'm super grateful for the connection. And I look forward to doing this a lot more. But just getting to know you as a human being too is going to be is going to be an amazing journey. Where can people find you? Where can people connect with you? How can people reach out?
Okay, well, to follow my trip and my social media, if you go to Instagram it's just on the Vertigo. All, one word on the Vertigo. A little play on words. You got that. It's like we have Vertigo, but we're going like, oh, no, stupid Facebook. You can find us at Miners on on the Vertigo. And if you go to either of those sites, you can see every video from my last trip last September. And you'll also be able to watch the real time stuff that happens from here on out.
And we're gonna be documenting this next trip from Colorado to San Francisco three or four times a day. And hopefully it's interesting enough to watch. There's always a surprise. You never know what's gonna happen. I don't mind being stupid and silly and dancing, but also, it's a travel. It's a travel documentary. So on the Vertigo, Instagram Facebook is just Miners on the Vertigo. My personal Facebook is Steve Schwer. Anybody can find it. I'm willing to talk to anybody. People instant message me daily that I've never heard from before that ask me questions or want to touch base.
I make time for everybody I can, and I touch base with 99% of the people that contact me. So I'm always available. I'm always out there come and talk to me because I love that. I love hearing from people. I love hearing their stories. People ask me about, what am I doing? And the first thing I asked them is, what's your story? Because that's more important to me is what their story is, because mine. It's all over social media. Now you can see it, but I want them to be heard, so it's very important.
So come and find me and let's talk.
Fantastic. You're an awesome human being. Thank you so much for being on the show.
Yeah, it was absolutely my privilege. So I was really nervous today. I was shitting bricks to tell you the truth, because I looked at the people you interviewed, and it was doctors and people that are doing a medical miracles and Ted talks. And I'm like, oh, my God. I'm a blue collar shit bag laying on my couch. What do I have to talk about? I was like, I was really intimidated coming into this, but you made it very comfortable. And I'm Super glad we had this chat.
Me too. And I'm glad that next time, I'm going to have to do a better job of making sure you're not nervous. But, I mean, come on. You came recommended from the best, and you didn't disappoint. And this has been a great show.
Okay, great. After you read my book, let's do this again.
Absolutely.
Probably have a lot more questions. Absolutely. Okay. Take care of.