Good Life Project - Redefining Possibility | Kyle Bryant

Episode Date: September 17, 2019

Growing up in northern California, Kyle Bryant (https://kyleabryant.com/) loved being outside and being active. But, his late teens would change everything. He began experiencing a loss in balance, coordination and strength. A battery of doctors and tests eventually led to a diagnosis of Friedreich’s Ataxia (FA), a rare, progressive neuromuscular disease that currently has no treatment or cure. While grappling with this diagnosis and all it meant, Kyle discovered cycling, and, along with it, a new lease on freedom. He's now completed numerous ultra-distance rides including "The World's Toughest Bike Race", Race Across America in 2010, as part of 4-man Team FARA which is the subject of the documentary The Ataxian. He is the co-host of the Two Disabled Dudes Podcast and the author of a moving new memoir, Shifting Into High Gear (https://amzn.to/31R1QaR). Bryant is also the founder and director of the bicycle ride fundraiser, rideATAXIA for the Friedreich’s Ataxia Research Alliance (FARA). rideATAXIA is currently held annually in 6 locations and has raised over $7 million for Friedreich's ataxia (FA) research since 2007.-------------Have you discovered your Sparketype yet? Take the Sparketype Assessment™ now. IT’S FREE (https://sparketype.com/) and takes about 7-minutes to complete. At a minimum, it’ll open your eyes in a big way. It also just might change your life.If you enjoyed the show, please share it with a friend. Thank you to our super cool brand partners. If you like the show, please support them - they help make the podcast possible. Hosted on Acast. See acast.com/privacy for more information.

When Kyle Bryant was a kid, he grew up in California, kind of like your everyday kid, running around, playing with all of his friends, super active, athletic, outdoors all the time, his whole family was. And then in his late teens, something started to change. He noticed that he was struggling with his stability and balance and strength to a certain extent. And normally a super active kid and an athlete, he was starting to sort of see declines in his performance that nobody could really explain. being in the mix, and eventually a diagnosis of something called Friedreich's ataxia, or FA for short, which is a neuromuscular condition that is progressive in nature. And as of now, at least, there's no treatment or cure for it. He was about 17 when he got that, and he had to make some decisions about what he would do with his life, about how he would define himself and the expectations he had for that moment forward and

the choices that he would make and the actions that he would take. And that led to him actually going to college and then discovering in a moment cycling, actually using a specially developed tricycle. And that profoundly changed his life and set him on a path to become not just what I would describe as an ultra endurance athlete, but really somebody who was on a mission with a stronger, bigger sense of purpose to shine the light on what he we all define ourselves as able-bodied or disabled, and what that even means in the context of our sense of possibility and how we choose to live each day. His entire journey is also detailed in a really moving new memoir called Shifting into High Gear. And we explore a lot of the really powerful moments along this journey in today's conversation. Super excited to share it with you. I'm Jonathan Fields, and this is Good Life Project. It has the biggest display ever. It's also the thinnest Apple Watch ever, making it even more comfortable on your wrist,

whether you're running, swimming, or sleeping. And it's the fastest-charging Apple Watch, getting you 8 hours of charge in just 15 minutes. The Apple Watch Series X. Available for the first time in glossy jet black aluminum. Compared to previous generations, iPhone Xs are later required. Charge time and actual results will vary. Mayday, mayday. We've been compromised. The pilot's a hitman. I knew you were going to be fun. On January 24th. Tell me how to fly this thing. Mark Wahlberg. You know what the difference between me and you is? You're going to die. Don't shoot him, we need him. Y'all I was born in Auburn, California, and I grew up in the foothills in California, Grass Valley.

I went to school, you know, elementary school, high school out there. And I went to college at UC Davis right near Sacramento. And I owned a home in Sacramento for a little while after college. Yeah. And it sounds like you were also like you and your whole family, I guess, were just super active, super outdoorsy. Yeah. Yeah. I mean, yeah.

Hunting and fishing and camping and, you know, with my parents and my brother all the time. You know, we owned a boat and my friends owned a boat. And so we would be wakeboarding and stuff. My brother and I were lifeguards and all my friends were all lifeguards in high school. And so, you know, we'd lifeguard and then we would go wakeboarding on our breaks and stuff. And, um, I mean, shoot shoot it was a dream it sounds pretty idyllic um that's awesome what were were you into i mean when you were younger was there did you have a thing were you sort of like into any particular things where you're like oh i just want to do more of this um not really um and you know i think i was i was into everything you know i loved think I was into everything.

I loved lots of different things. And that's one thing that I appreciate about my disability, about FAA, is that it introduced me to cycling. And I don't do a lot of different things anymore. And I focus on cycling and that has allowed me to become a what i i enjoy it because i feel like i'm pretty good and i can do it well and um you know focusing spending all my energy preparing for cycling and getting good at it has has been a really positive thing in my life yeah it sort of gives gives you one place to turn all of your energies. So you brought up FAA and you brought up cycling.

So let's kind of fill in the spaces here. Yeah, yeah. So you're kind of just going about living an everyday life. You're the kid kicking around with your family, with your friends, super active outdoors. When do you start to notice that something's just a little different? I think, I mean, thinking back on it, I think I started seeing it early, but, you know, we didn't really know what to think of it. Like, I didn't, you know, my skills were going down in baseball specifically and, you know, basketball and things. I wasn't able to keep up with my friends.

I was on the football team freshman year of high school. And I was, you know, I'm obviously not built like a lineman, but I was on the offensive line because I couldn't run fast, you know. And, you know, so those kinds of things were kind of adding up and that's what forced us to start looking for answers. So it really started as, you know, balance of coordination issues. Yeah. Did it happen sort of slowly over time or was this, was this sort of like fairly quick? No, absolutely. It did happen slowly over time. And it's still, you know, in me, it progresses a lot more slowly than other people. And that's kind of one of the things with FAA is that, you know, from person to person, it varies a whole lot depending on some things that we know about and some things that we probably just

don't even know, you know? Yeah. So you're, you're noticing these sort of symptoms or, you know, around balance and stability and stuff like that. And did you immediately sort of like, cause you're a kid at this point, you're like late teens, right? When this is starting to happen, did you immediately go to your parents and say something's going on? Or was it more like, eh, let me just sort of pretend this isn't happening? It was totally pretend this isn't happening and I'll just push through it.

You know, my skills were going downhill in baseball when I was like 14, 15 years old. And, you know, my dad finally convinced the rest of us that something was truly up here and we need to start looking for answers. And so, you know, I'm really grateful to my parents. I have incredible parents. And, you know, for them being such an advocate for my health

and being like, you know what, something's off. Let's take a look at this. Yeah. Did you, when your dad, when your parents reach a point where like, okay, something is off enough so that we actually need to treat this seriously and go, did you ever, have you talked to them about the fact, like, whether they thought they knew what was going on or what their fears were or the concerns were in their minds, you know, before they even started down this road of figuring it out? Well, I mean, so the first diagnosis we had from a doctor was benign tremors. And so just because I couldn't hold my hand still when I would hold it out in front front of me and so we're like, Oh, it's just a, it's just the thing. And, you know, like nothing to worry about, you know, it'll go away or it'll just be something we can deal with. And, um, you know, that would turn out not to be the case

because we kept looking for answers and, and, um, you know, a couple of misdiagnoses, uh, MS and other things. Um, and finally landed on the diagnosis of FAA. But, uh, I think, you know, initially my parents didn't think that it was anything all that serious, um, that it was like, here, take this pill and you'll be fine in the morning or something right and that is uh you know not what what ended up happening yeah when you were going through this whole thing because you and your brother are pretty close in age also he's a couple years old right were you were you were you guys open with each other or were you sort of like sharing what was going on in your head about this with him not Not really. Yeah, I mean, we, you know, we hung out some

and we had same groups of friends of, you know, a few overlaps here and there. But, you know, we weren't really like late night, heart to heart kind of guys. You know what I mean? Not many guys are, especially at that age, you sort of like, you just don't have the skills to even attempt it. Exactly. What about your friends? I mean, because they, I mean, obviously if your parents are starting to take you around to docs and they're, if it's enough so that you're noticing and your parents are noticing it, I'm also guessing that like whoever you're playing on teams with or your friends around are also

saying, huh, did you, were they brought into the loop at all sort of early on or? I, you know, I think I tried to keep them in the loop because, you know, I have, I was really close with my friends. They mean the world to me and they still do. Um, and it was really hard to, um, think of myself as disabled or with a disease, you know, in the scope of my group of friends. And sort of, I mean, at that age, comparing yourself to other people, right? And, you know, feeling like I was going to hold my friends back from what they wanted to do in life or not in life, but just day to day, I guess. And so that was really hard. I asked, I love asking my friends what they thought when I was first diagnosed.

I had a doctor's appointment one day. I found this out a couple of years ago, but I guess I, you know, all my friends were hanging out in my one friend's parents' house in the basement. And I walked down the stairs and I said, you guys, my doctor said my brain is shrinking. And like, so that was my understanding of what was going on at that point. Obviously, that wasn't true. But that's what I took from, you know, and maybe I was trying to be a little overdramatic or something.

But, you know, I think my friends always knew something was up, but they just didn't know what it was or what to do. And I think it was a bit of relief to all my friends when we're like, all right, we have something to point to, to be like, all right, this is what's going on. And now we at least know we're not just we don't want to feel bad anymore. It's not anyone's fault. It's just it yeah so tell me so walk me through um when you finally go to this doctor who's like okay so i think i know what it is um and then i guess they're testing that gets done right yeah well and the thing is like the first few doctors we went to they didn't even know what Friedreich's ataxia was.

You have to order the Friedreich's ataxia test. And so if you don't even know, like then you can't test for it, right? And so it really took someone who had seen FAA before, and they could pick it up just by walking. But just by watching, We walked down the hall, and then obviously we got the genetic test to confirm it. I mean, you can hear it in my voice right now. I haven't had any drinks today, no. But I feel like I could probably diagnose FAA over the phone just because I know how it sounds. You know, I've heard it so many times and I love the people behind those voices.

You know, so many of my good friends. Yeah. So what actually is it? You know, like you, we shorthand it as FAA. I guess that's sort of like the easy way to say it. Tell me more about what it actually is. So DNA is a series of codes, and one of those codes is GAA. Now, you have less than 30 GAA repeats in your DNA as a code. I have 450.

Some of my friends with FA have over 1 over a thousand up to like 1500 repeats. When that code gets decoded, it makes a protein called frataxin. I don't make enough frataxin. And my friends with that, they don't make enough frataxin. And frataxin is needed to help the body make energy for all the operations of a cell. And so with a lack of fray taxon, then cells basically just don't operate correctly. And it causes a lack of energy and it causes balance and coordination issues, scoliosis, diabetes, hearing loss, vision loss, and life-shortening heart complications. You know, and so people see me, I'm 37 years old, and I'm still getting around, and I'm still,

you know, a happy guy and productive, and people feel like, well, what's the big deal? You know, like you can hear them saying that in their heads. And I am really fortunate to have the ability that I have right now. A lot of kids are diagnosed before the age of 10, and the outlook is not as good as what I experienced. So this truly is a life and death situation. And, you know, the bike rides that we do and all the funders that we do to fund research, we're working to make life better

and to find a treatment and a cure for everyone with FA. Yeah. Is this a commonly occurring, about how often does this occur, sort of like in people on an annual basis? So the prevalence is about one in 50,000 people. So that is about 5,000 people in the U.S. and about 15,000 people worldwide. So it's pretty rare. The National Institute of Health, they designate a rare disease as a disease with a population in the U.S. less than 200,000 people. negatively affects willingness for companies to invest in research around it because generally there's a financial motivation for a lot of this because it takes a huge amount of money to actually

find interventions when the population is that size. Is part of the challenge that there's just not a lot of money and effort going into trying to figure this out? You know, numbers are a challenge, no doubt. Yeah. You know, and drugs are going to cost a lot for the rare disease community. You know, that's an issue that we're all working on together in the community. But however, you know, there are for common diseases like the cold or hypertension or, you know, things like that, there are so many. There's like generics out the door, right? And rare disease, there's 7,000 different rare diseases. I think 95% of them don't have a treatment or a care.

And there's 30 million people in the U.S. that are affected by rare disease. And so when you think of it as the rare disease community, the rare disease is the next frontier, I think, for a lot of companies. A lot of smaller companies are being formed around the idea of rare disease. They're like, all right, this is all we're going to do. So there is a business model for rare disease treatments and cures. You know, I don't think we're at the point where we know what a reasonable cost is. And, you know, obviously we're not here to talk about that, but it is a challenge. Numbers are a challenge for the religious community, but it's something that is like any other challenge.

We're going to deal with it and figure it out. Yeah, I mean, I guess it's interesting also with FA because it sounds like because it's genetically based, when you start to look at things like CRISPR and things like that, where you can start to get into gene editing, that I guess not just for this, but for so many other things, it could be paradigm shifting in a lot of ways. Absolutely. It absolutely has been a huge change in our community just in knowing what's possible, all right, and using it to expand ideas of how to approach treatment and using CRISPR, for example, in some of the research, maybe not as a direct treatment option, but to manipulate cells in addition, figure out how we might be able to solve this problem.

Yeah, yeah. No, I feel like we're on just the leading edge of that in so many different ways. I'm really excited for however it is, two, three, five, ten years down the road when it just becomes so much more developed and common. Let's kind of jump back into your sort of unfolding story though. So you, you're, you're, I guess, 17 when you finally get a diagnosis. Somebody says, this is what it is. We now know what it is.

This is what it's about. And, and this is how, you know, it can potentially manifest in your life. When, when you hear that and when you're sitting down, you know, it can potentially manifest in your life. When, when you hear that and when you're sitting down with your family, what's going on in your head, what's going on in like with your parents and stuff like that? Well, I think, you know, um, from a young age, you know, and that vision was crushed in that moment. You know, when we, when they said Friedrichsdokia and we, they said, don't look, don't look it up on the internet. And that's what you do. Right. And, uh, you know, and that was 1998. So there wasn't a whole lot of information. And what was on line was not good.

It was hard to take, you know, not that it wasn't true, but it was just not sugarcoat. Or, yeah, there just wasn't a whole lot of hope back then, especially online. And so I think partly I had for the future. And as I would come to note more over the next couple of years, I would find out more and more that like my life is going to be a lot different than what I had imagined it would be. Yeah. So this would have been the end of high school for you also. And you were on your, were you already,

were you on your way to UC Davis at that point? Yeah. Well, so it was around the time when I was, you know, knowing that I was going to go on to college. So yeah, it was, it was a big change in a lot of ways in my life. Right. I mean, and so trying to figure out how this thing was going to fit into the plans I had for my life and how I was going to affect the world and, you know, affect the people around me. And, you know, I think I saw myself as a leader and I saw this as jeopardizing kind of that position and kind of knocking me down a few rungs at the moment and you know until I could figure out what the heck it meant and what the heck I was going to do with it in my life. The Apple Watch Series X is here.

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Compared to previous generations, iPhone XS or later required. Charge time and actual results will vary. Mayday, mayday. We've been compromised. The pilot's a hitman. I knew you were gonna be fun. January 24th. Tell me how to fly this thing. Mark Wahlberg. You know what the

difference between me and you is? You're gonna die. Don't shoot him, we need him! Y'all need a pilot? Flight Risk. you know it's interesting to have like those plans and also to see yourself to have this identity self-identity as a leader absolutely you know and then um because it's really, you've got to reimagine and re-envision, like, from, think round up, who am I? And what's the life that I, you know, like, thought that and expected I was going to live? And I guess you can't even plan or imagine what the life you will now live is because there's just a lot of uncertainty ahead of you. Right, yeah. And not only that, but, you know, the disease, it's a progressive disease. And there's no treatment, right? Yeah, and no treatment or cure yet.

And so, especially when I was 17, I had no idea. You know, I knew that one day i would probably be using a wheelchair i didn't know when or you know how quickly or what symptoms i would experience and all that stuff so um it was a really really uncertain time yeah for sure had you considered not going to school after that or You know, and so, you know, I'd say there was a blow to my vision, but I also resisted big time letting F.A. shift. You know, maybe it changed the way I got things done, but it didn't change what I wanted to do in life. And at the time, it was very important for me to go to school because basically my mom said like, just go to school. You can do whatever you want after that. But I really, really wanted to go to school. That's like the one thing. So you, and you end up going to school, you know, so you've been dealing with this and, and navigating it with family and friends and sort of like a slow evolutionary process.

Then when you step into school, it's a whole new community and it's a way and it's, were you, were you concerned at all about, okay, so like, I'm cool with my friends and we love each other and we're like, well, whatever. It's like, you know, we just, we figured out along the way. But now as I step into this entirely new space with all new people who don't know who I am, don't know my history, don't know my values and everything else, you know, like, are they going to see me for me? Are they going to see like this? Like, was a sort of part of the conversation in your head yeah I and I mean I think it continues to be I think maybe that's what we all experience all the time when we meet someone new right like what what did they think of me and um and so you know that that was a a thing. But ultimately, you know, I did end up going to the same school as one of my really good friends since we were in like kindergarten.

And, you know, we made some really good friends right away. And it ended up being an amazing experience. But, yeah, I mean, it was big time because I was on my feet. So if I was like maybe leaning against a wall and talking to somebody, you would never know that anything was wrong. But as soon as I took a step and I was a little uneasy, you'd be like, what's up with that guy you know and um so it was something that was in every interaction i had with somebody new that i met and you know it was a little bit of a fog too

hanging over even my good friends um because everyone knew there was something wrong. They knew there was something called F.A., but I didn't talk about it that much. I didn't really know how. And so I think it probably was a little bit of a barrier between me and some of my friends. Yeah, I know you write about an incident that happened. I guess it was coming home from a party with some cops, which there was a whole lot of misunderstanding that happened there. Yeah, yeah.

And a lot of that misunderstanding in that situation was because I didn't have a good grasp on what I thought about F.A. and what I thought about myself being a disabled person and what that meant for me. And so I wasn't able to talk about it with that cop that night. And instead, I just got pissed off. And it wasn't a good situation. Yeah. I mean, so share what happened sort of. So I came out of a party and the guy saw me, the cops saw me stumbling down the street and, you know, figured I was way too drunk for my own good and sat me on the on the curb and kind of he calls for backup. He called an ambulance and a fire truck and all these lights and sirens started showing up. And, you know, because they figured something was really wrong and I was not behaving very nicely towards them because I didn't know how to handle it. And, you know, I figured everybody was looking at me and thinking down on me.

So that's the way I felt about myself. And I kind of projected that. And so I couldn't communicate clearly and let them know, you know what? I have this thing called Friedrich's Diatectia. It's a repeat in my DNA that causes me to wobble when I walk. You know, like there's an actual reason for this. But I couldn't explain that, you know. And finally, we sort of got around to that idea.

I think my friends probably helped out a little bit because they weren't as emotionally like torn up as i was at that point and finally they you know the somebody was able to to drive me home and what it ended up fine but you know it was the situation where i was like all right i gotta get a handle on this because or else these in these things are gonna keep, I mean, it seems like it's interesting that you remember that one incident also. And it seems like that incident or maybe that whole window of time was kind of like a turning point for you to a certain extent. Yeah, I think so. You know, I think it's a turning point for a lot of kids, you know, in college

trying to figure out what the heck is going on for the rest of their lives. Right. And for me, there was this added complication of this rare disease that was causing me to, you know, get closer and closer to being in a wheelchair. And and so, I mean, yeah, it was definitely a really tough thing to figure out how to make it work and um you know it was all coming down to you know i feel like after college you're on your own you should be able to take care of yourself right and and i was starting to question if i was going to be able to take care of myself after you know after when I'm supposed to be able to. Yeah. I mean, so where do you, where do you go from there? How do you go from, from that place

to starting to, to reclaim a sense of, of directionality and agency and purpose almost to a certain extent? Yeah. I think, well, I think it takes the recognition that something needs to change. And then it's one step at a time, one day at a time, one pedal stroke at a time, right? And, you know, it's little changes. Talking about their recognition, like the recognition and then changing things obviously doesn't happen overnight. It happened over a period of like 10 years, you know? But it also, I think, requires, for me, it was a lot of my friends and family and really good examples in my life, like my parents, who I could be like, all right, I need to change something because if I don't, then I'm going to go a way different direction

than where I need to be headed. Yeah. I know at some point along the road around here, you discover cycling, but a different kind of cycling. When does that actually come into your experience and how does that happen? So I was at home at, I lived with a friend in Sacramento and I was like, this is like after you graduate. Yeah. After I graduated, I was working at this engineering firm in Sacramento called Brown and Caldwell, amazing place. And I was, you know, sitting in my cubicle during the day going,

seriously, is this all there is to life? I think we all have that question at some points. But then one night I was alone in my room and I was surfing the internet and I saw this guy who was about to circumnavigate the country on his trike, this thing called a recumbent tricycle. I had never seen one before. The guy had to MS, but he was about to do like a 6,000 mile, whatever it was, ride on his trike. And I was like, oh my gosh, maybe I can do that too. And the next weekend, I found a dealer near me. And the next weekend I went, I did my first test ride. And, you know,

I took one pedal stroke and I saw the ground moving underneath me. And it just gave me this amazing feeling like something magical was happening. And I was able to move under my own power without a wobble, you know. And from that moment on, I was addicted to cycling. You know, I keep thinking that that feeling is going to fade at some point. A long time has passed, but every time I get on my trike, I still feel that there's no place I'd rather be than on my trike because I feel powerful. I feel like, you know, I have control and I can go as far as I want to go when I'm on my trike. Yeah. I mean, so for you, it sounds like it's almost giving you back a certain amount of freedom. Oh, big time.

Yeah, I know. And, you know, without the trike, for me, my world shrinks. You know, and speaking of freedom, I mean, when I'm on my trike, it expands so much. And I think that relates to my life when I'm not on my trike. You know, it allows me to think a little bit bigger. It just opens my eyes a little more because I know what my potential is because of what I can do on my trike. Yeah. When you start after that first time and the light bulb goes on, you're like, huh, this is amazing. Where do you go from there with the trike?

Because on the first time, it sounds like the first time you're trying, you're just trying. You're like, ah, let me check it out. Like, we'll see how it is. The switch gets flipped and then you're like, okay, what am I going gonna do with this i

i called my dad i was at the shop i called my dad i was like dad can i borrow three thousand dollars i paid it back right you're like look i'm fresh out of school but i gotta do a job i just need a first short of at a time so so i bought one that day and I started riding every chance I got. And the first few rides were a few miles, but soon I was riding 25, 30, 50 miles at a time. And within four months, I rode a century ride. Which is 100 miles. 100 miles in a day, yeah. And I was the very last person across the

finish line but i've done it you know i i couldn't believe 10 it it took me 10 hours to finish that 100 miles but it was in the books and no one could take that away and that was an amazing feeling to me and i just wanted to keep having that feeling more and more yeah um i i can't even imagine crossing that finish line the very first time that you do that we're like family and friends like waiting there cheering you on also or no it's funny because it was kind of anticlimactic i was right i was by myself most most of the writers were done they were like finished eating their dinner and they were driving home there was a few like volunteer like they were taking breaking taking down banners and stuff and like there was a few volunteers when i crossed the finish line like i heard some claps from like you know across the field or whatever but it was but but i think that even almost

kind of heightened the moment for me personally because i was like you know what this is mine this is my moment and i love this And it's not about anyone else. It's about what I can do and what I think of myself in this moment. Yeah, it's not a performance thing for you. You weren't doing it because other people were there. And it wasn't about getting the cheers at the end. It was just about the way you felt when you crossed the finish line. Totally.

And that was a little bit of a departure for me because I'm kind of vain if I'm, so, you know, I really thrive off the feedback from other people. But I think experiencing that for myself and by myself, with myself, I think that was a powerful moment in my life to be like, all right, I can do this myself and I can be an independent, strong person with a disability. Yeah, talk about a shift in identity and expectation. Big time, yeah, yeah. And, you know, I think from that moment on, I started expecting more from myself.

I think that's a big thing, you know, especially for people with disabilities or rare disease. I think we're limited by our self-perception because we totally project that. We think other people think less of us but i feel for me i know it's i need to change how i think about myself and um and that can change how i see other people seeing me if that makes sense no i think it does and that i would guess it also it changes how other people actually do see you. When you feel a certain way about yourself, I think that radiates out. People just sense it.

They respond to it. It's interesting also, right? Because at that moment, you know, I'm curious, does that also open the door again to that sort of former identity of, well, I'm a leader. And did that make a shift in terms of your ability to say, well, maybe I can actually still be that person, but in a different way? Yeah, I think so. And now you say that. Yeah, absolutely. I, you know, like I said, I started seeing myself differently.

And maybe I started seeing myself a little more. That's how I used to, right? Maybe in a different way. Or I got there not exactly in a straight line, but I was starting to get back to the way I used to see myself. Yeah. So with that behind you, then, I mean, where do you go from there? Because this was not the end of the journey for you.

Right. I mean, 100 miles sounds incredible to anyone, but that's just the beginning. Yeah. Well, you know, before that, I had the notion in my mind that I wanted to ride my trike across the country to the meeting of the National Intoxia Foundation. And that year was in Memphis, Tennessee. So I had that idea in my mind. But before that century ride, before I crossed that finish line of 100 miles in a day, I had no idea if I could even do it. And, you know, so I think there was a big turning point in the book where I could see myself as an athlete. If I never finished that ride, I don't know that I would have ever attempted the Ride to Methods or Race Across America.

So yeah, that was a big moment for me um and it really opened my opportunities to the next step which was the ride to memphis you literally decide to ride was about 2 000 miles right from where you were in california to memphis about 2 500 so and it was that ride that made you say, huh, this actually could work. Yeah, maybe I can do it. You know what? Partly one of my thoughts was, you know what? If I can make it to the end of the block, why not the next? And why not the next?

And then all of a sudden I'm 2,500 miles away, you know? So that 100-mile ride really illustrated that in my mind how i could get it done yeah so when you decide okay i'm actually gonna do this where do you go from there because i mean you can't you can't do 2500 miles solo right yeah no i mean it was a matter of you know pitching the idea to my parents. And I really didn't know how that was going to go. I, my parents are really supportive, but also they're reasonable people, you know, and I'm not sure that a bike ride to Memphis Sea from California is a reasonable idea. But I also know that they knew that we were up against a wall and we need to do something about this.

It wasn't just going away. And this opportunity that I was driving, that I really wanted to do. It presented itself, and maybe my parents saw it as a way out of the hole that we seemed to be in, and it ended up being that. I think it's because we all treated it like that. It was this opportunity to make something of this terrible situation that we're in.

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Beyond you personally completing that ride, riding 2,500 miles and showing up at the meeting in Memphis, was there a bigger intention? Was there a bigger purpose? Was there something else that you were trying to do or prove? think it wasn't fully formed. But I knew that I was having an effect on other people, specifically people with FA. And I was starting to be that leader that I saw myself as so many years ago. And during my ride to Memphis, we started in San Diego and we rode about 40 miles a day. I was writing a blog post about every three days. And I started getting all these comments and emails from all over the world. From people who have the FAA, but also they don't. And just tons of people telling me how my actions were affecting the way they face challenges in their lives.

And I was like, oh, my, like, that made me feel like I had the responsibility to keep going and to make this thing happen, you know, so that I could bring a lot of people with me, I guess. And, and it was just an amazing, humbling experience to know that I could affect people in that way. And then, you know, over time, realizing that those same people are the people that are driving me to be better. And it's totally a circular situation in the FA community where we feed off of each other and encourage each other and get there together. Yeah. You were, if I remember correctly, was your dad riding with you on that one? Yep. Yep. Yep. My dad. if i remember correctly you were was your dad riding with you on that one that yep yep my dad

so he didn't even own a road bike until about three weeks before so it's like hey dad you've never touched a bike before but yeah well you know he was about he he rode a mountain bike i don't know that i would call him a mountain biker, but, um, he, yeah, he had never owned a road bike. He'd never ridden 50 miles in a day and, you know, sat on that tiny seat for, you know, six hours or whatever it takes. And, um, so, you know, my dad, my uncle joined us halfway through the journey, but, would call it the 40-mile butt wobbles because there was no way around it. Whatever you do, your butt just hurts after sitting on a seat for 40 miles. It is what it is.

So, yeah, I mean, and that adds this whole different element to it, right? Because you're doing it not just yourself. You're doing it, you know, and there's a community of people that start following along in the journey. And like you said, it becomes this sort of circular feedback loop. You're feeding them and they're feeding you but it's also this incredible experience that you're doing with you know like somebody really close to you who you love and who's like out there and said i'm gonna do this side by side with you the whole time yeah yeah and you know he's a guy who doesn't say much but he uh you know he shows up and gets the job done and And we didn't exchange very many words on that whole 2,500-mile bike ride, you know, but we were there together. And, you know, when you're diagnosed with a rare disease,

it's not me. It's not I was diagnosed. It's we were diagnosed. You know, it's my parents, my brother, all my friends, my whole community, everyone. And, you know, my parents were like, all right, let's do this. Like, we're in this thing. We want to support you. And you know, even though the words didn't exchange all that much, well, my dad and I were on the

bike. Um, you know, we really felt the support from each other, I think. And, and that's really what drove us. And that's still what drives us to, to this day, I think. Yeah. This whole ride took, if I remember, close to two months, right? 59 days, yeah. Is that what you expected going into it? Yeah, because we kind of mapped it out as well as we could, you know, and we expected, because, you know, we were riding to a conference, and the conference starts on a certain day, right? So it was like, all right. We more or less knew how long it was going to take.

You know, towards the end, obviously, we had to adjust a few things. There was a point where we had to ride. Like, we would usually ride about six or seven days and then take a a whole day and rest yeah um but towards the end you know there was a point where we had to ride 10 days in a row to make sure we were going to make it there on time but really i think it kind of worked out yeah how was um so for two straight basically, you're out there on the road. How is your body responding to this? Because it's one thing to go and even do a sentry and then relax.

It's another thing to go out for regular rides in your neighborhood. But to keep up that pace for that long with a condition where your body is sort of struggling to create energy? Physically, how was it for you? I think it was an adjustment, you know? I couldn't behave like people my age, right? I had to be focused on like, okay, I'm going to be riding my bike all day, so I better get to bed early. I better eat something good. You know, I better do all these things that are going to feed my body and make me perform well. So I think I sort of grew up, you know, in those two months, I really grew up a lot being able to listen to my body and know what

I need to do to perform well. Yeah. Other than just sort of like having to make a lot of adjustments on the way, were there moments of big awakenings or surprises that came your way or stories that have really stayed with you or shaped you? Yeah. You know, one, it happened early, but, you know, I was having a lot of trouble with my IT band, and it was giving me a lot of pain.

IT band, it basically hurt in my knee. And as we were climbing the mountains out of San Diego, I was talking to my dad about how my knee hurt. And he's like, oh, well, you're not going to need your knee in the future. So don't worry about like just. And and, you know, I appreciated that comment because it put it in perspective that this was just something we were dealing with. We're going to get through it. Let's laugh at it for now.

It's not like he wasn't taking it seriously. But, you know, we were kind of having a conversation without having a conversation. And, you know, it was one of those moments where my dad and I connected directly. And, you know, he was really voicing his concern for the situation in his way. Right. And, you know, so that was that was a really neat moment for us. And I mean, I guess the other that really sticks out is just finishing the ride, knowing it's behind us and knowing what we can do and once again changing the way we think about ourselves and about rare disease and disability, you know? Tell me about that day when you ride into Memphis.

So it was funny because we didn't get lost all that much, but we got lost that day when you when you ride into memphis so it was funny because we didn't get lost all that much but we got lost that day like right we were so close no you know we got in this big argument like we are almost there do not self-destruct right now you know but um but it was really neat we we rode by graceland we rode we rode our bike sales house right so i always uh yeah i always joked that i rode my bike down the south so that was that was really neat but um you know just pulling in our friends a couple of our friends flew out. They had champagne and they were giving us a champagne shower. And that was that was incredible. And, you know, there were a few other people with the attack around.

I got to connect and they got to tell me how proud they were of what we were doing. And that was absolutely incredible. The leaders of the organizations that we were writing for were around. And, you know, it just made me really proud of what we did. And it made me, you know, think of the future. What was I going to do next? Like, how could I outdo this and bring the community with me? Yeah. So it sounds like it was proof of your ability to do something that is so far beyond the

expectation of the most able-bodied person out there. Right. And it's like, no, if I can do this. Yeah. Like, what is the universe of possibility? Maybe I can just define it yeah no one totally so i always think about this if i rode my bike across the country as a disabled person like what is disability like it all it is is what we think it is, right? Like, that sounds a lot more able than a lot of, quote, able-bodied

people, right? And so, you know, it got me thinking around that train of thought where maybe I'm not as disabled as I thought I was. And, you know, I need to expect a lot more out of myself. Yeah. I mean, that's such an amazing shift just in your lens on possibility. And again, it's sort of like these series of moments that it seems like keep evolving your sense of who you are and what you're capable of and the way you're identifying yourself. Yep. Absolutely. Yeah.

And identifying, yeah, myself to myself. I mean, I think, you know, a lot of it was I wanted to prove something to the world, but more and more as I get a little older, I'm like, no, I'm just proving this to myself and everything else will fall. Yeah. And in fact, that was not the longest ride that you've done. You're like, 2,500 miles was good. But there's something longer that I can do after that.

Yeah, yeah. So I heard about this race through a friend. It's called the Race Across America. It's literally ocean to ocean from the pier and ocean side to city dock in Annapolis, Maryland. So it's 3,000 miles all the way across the U.S. And to be considered an official finisher, a team has to finish in less than nine days. So it's 500 miles more than you rode before. And instead of two months, it's got to be nine days.

Right. Exactly. No problem. Yeah. So, you know, it was, I feel like I love to throw something out and see if I can go and get it. And this was one of those things I was like, all right, here it is. Boom, let's throw it out. And now let's see if we can go and get it. And this was one of those things. I was like, all right, here it is. Boom, let's throw it out. And now let's see if we can go and get it.

I wasn't sure if we could, obviously. But also, we prepared like crazy for it. And we had a really great mentor. And, you know, it was the only thing on our minds for a year so uh you know 3 000 miles at 14 miles an hour 24 hours a day um we crossed the finish line in eight days eight hours and 14 minutes man so that is unbelievable i mean that that race has been on my radar for because that race has been on my radar because that race has been around for a long time. And it's known as being pretty much evil, pure evil. I mean,

this is a brutal thing. You're riding across two massive mountain ranges. You're riding across this just big open space with crazy winds. And it's, I mean, there are reports of people being delirious losing their sense of everything along the way because you're pushing so hard um for so long so aggressively so yeah i mean to to to accomplish that you know then after what you did the trip to memphis is it's really just stunning it's like you keep saying well maybe this thing you like quote disability like what is or is isn't that right i keep being capable of doing things that you know like anybody of any condition at any level of ability would find stunningly hard to do yeah i mean how yeah how do we define it like if you if you finish the Race Across America, are you no longer considered a disabled person?

I don't know, you know? And what makes somebody more disabled than somebody else, you know? Or, like, how do we even think about that, right? You know, it causes me to have those thoughts for sure. Yeah. And it seems like you've also really picked up the mantle of that leadership mantle of being a voice for this disease, being a voice, not just not a voice for the disease, but a voice for the community of people

who are living with it, for the sense of possibility around it, for attracting people and I guess awareness of it and maybe helping raise money. Because at this point, you've now, all of these things are now tied to some incredible fundraising that you're doing for research into it. Right. Yeah.

And, you know, it truly is a matter of all of us working together and encouraging each other to keep going and to raise more money. And because, and it's not just money, but it's progress towards a treatment and a cure for all of us together. You know, and one thing I want to say about Race Cross America is it wasn't just me. I mean, we had a team, we had four riders. We had 13 crew members who were all connected very closely to FAA through a friend or a daughter or a brother or whatever it was. Um, and that's really what Travis cross conjure is the purpose. Um, and you know, what you're talking about, what all this comes down to is

why are we doing this, right? Is because we want to improve the lives of others and we want to trim it into care for FA. Yeah. As we sit here today, so a lot of this is shared in beautiful detail in a book that you've created. What was the impetus for you to actually turn on after all this and say, like, this needs to be a book?

Well, partly all of my cycling and adventures have been documented, you know, through, like like articles that I've written or like mostly stuff that that I've done myself. And so I was like this, you know, this big ride that was really the turning point in my life needs to be written down. And partly for for me selfishly, but partly hoping that it might speak to other people that have FA or rare disease or with any challenges, you know? And I didn't write it with the intent to be like, all right, if you follow these steps,

this is how you're going to conquer your challenges. But I wrote it with the intent to document how I did and how I felt about myself, what I was thinking at all these different times, and then sort of illustrate how I got to the point where I was. And maybe it relates to you as well, you know? Yeah. You share a story. I guess it was right towards maybe the last day, maybe the last hundred miles or so

of the race across America, where I guess you're pretty beat up, pretty tired and struggling. And I guess there was a kid who came up to you and sort of like shared some words about how you were affecting him. Could you share a bit more about that moment and, and how that sort of changed you and moved you? Yeah. Um, you know, it was really powerful. A young boy named Jack, I'm still friends with Jack and, uh, he's an amazing guy, but he was 10 years old. And I pulled, we pulled into a time station. And like you said,

it was day eight and I was tired, sore and crabby. And, uh, immediately I saw this boy, Jack, and I started feeling sorry for him. You know, I was feeling sorry for the fact that Jack had to deal with that at such a young age. But then he came over to me and looked me in the eye with pride and confidence, and he said, Hi, I'm Jack. I have a track too, and your team has inspired me to ride five miles in my neighborhood for FA research this summer. And, you know, not only does that melt your heart, right, because of what he's doing,

but it also forced me to be like, all right, what are we doing and what more can we do to, you know, support Jack and all these other people? Because he's reaching out being like, look, I'm doing my part, you know? So, so everyone should too. And not, not that I knew I was, I was, um, in the act of doing my part, but it really illustrated and solidified the idea of community and everyone pulling their weight in and we'll all get there together. Yeah. Um, and such a powerful moment also, because I think we all, we hit those moments

where we're pushing really hard and maybe we're in a lot of pain or maybe we're just in a dark space. And my sense is that so many of us tend to withdraw into our own suffering in those moments, understandably so, right? We're human. Sometimes when you have somebody on the outside who can kind of just step in and just say something or do something for a moment that kind of pulls you out of the fact that, you know, like, okay, so yes, yes, and there's something much bigger going on here. You know, there's a bigger purpose that I'm a part of and there's a bigger role that I'm playing. That can really just in the blink of an eye shift the way that you experience the identical circumstance. Totally. And I think it's up to us to be open to being able to see. Not that at that moment, not that I was totally open to it,

because it took Jack to be like, dude, wake up here. Look what we're doing. Because I was tired and sore, and I was like, I'm the guy. I'm getting this done. And Jack was like, no, dude, we're all getting this done together. Wake up. Yeah. This feels like a good place for us to come full circle as well. So sitting here in the studio on Good Life Project, having done so much incredible work and having

so much incredible work ahead of you. If I offer out the phrase to live a good life, what comes up? I think service to other people. And like I was saying, I'm, I feel like I'm a little bit vain like a lot of us and, and a little bit, my ego takes over sometimes. But in theory, I always come back to serving other people and trying to remain humble and being a part of the community. And not being the guy, but being a piece of the machine that's going to get us all to the finish line. That's what I think the living good life is. Thank you. Absolutely. Thank you. Thank you so much for listening. And thanks also to our fantastic sponsors who help make this show possible. You can check them out in the links we have included in today's show notes. And while you're at it, if you've ever asked yourself,

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Compared to previous generations, iPhone Xs are later required. first time in glossy jet black aluminum. Compared to previous generations, iPhone Xs are later required. Charge time and actual results will vary.