What would you do, start, or finish if you knew your time would be cut short?
This is the question that Kyle and Sean were faced with when they were diagnosed with a rare disease called Friedreich’s Ataxia (FA).
How many people in today’s world leave this world with a life not fully lived? This episode provides wisdom in what we can, what we could, and why we need always to be living. Sean and Kyle both are using their journey and story to move what seem likes mountains for others.
We only have one life, and this episode will inspire you to find ways of doing less, but being more of what makes you, well you.
Check out The Ataxian movie – http://theataxianmovie.com
For help, resources, and community support, please join the Causepods Facebook Group if you are already producing podcasts for a cause or are thinking about launching one.
And if you would like to be a guest on Causepods, please fill out this form and schedule your chat here.
Hi and welcome to CausePods, I’m your host, Mathew Passy. Here at CausePods, we have one simple mission to highlight the amazing folks who are using podcast as a way to raise awareness for good causes and make the world a better place, whether it’s in their own local community or their taking on global issues.
Please visit us at CausePods.org where you can learn about our guests, show their favorite charitable cause. Join our Facebook group of resources for CausePods podcasters and find a link where you yourself could be a guest here on CausePods. Again, that’s all at CausePods.org.
All right, we are doing it once again, we are having multiple guests here on the show here on CausePods chatting with Kyle Bryan out of Pennsylvania and Schoenbaum Stark of Sacramento, California, the host of the Two Disabled Dudes podcast.
Their mission is to encourage listeners to set their sights beyond the challenge in life and find ways to live beyond their circumstances. We’re going to talk all about their circumstances, all about this show, all about their mission and so many other cool things it sounds like they are doing. But Kyle and Shawn, thank you so much for joining us here on CausePods today.
Thanks for having us. Yeah, glad to be here. Two disabled dudes, I feel like that’s pretty self-explanatory, but explain before we get into the show what you guys are all about, how you two became connected and what has been your mission that led up to the launch of this podcast.
So I was diagnosed with Friedrich’s ataxia when I was 17 years old, this Kyle. And, you know, we looked online and found out that it was a progressive disease and it would slowly take my physical abilities away and it would likely in my life for early. And that was a lot to take at 17 years old.
And so I started writing my Trich Attrite three wheeled bike because I’m not very balance centric. So, you know, I did a cross-country bike ride and that’s when I had an article in the local newspaper, and that’s where I met when I met Shawn. That’s how we got hooked up. He reached out to me. We started talking because he was just diagnosed with that same disease. And we’re like, all right, there’s got to be more to life than just this diagnosis.
And that’s kind of how we got introduced. And so you’re told that you have this Friedrich’s ataxia, you’re told that it is going to be debilitating, it is going to be progressive before you have that turnaround. What was that like being told all of this information and kind of in knowing where all this could go?
How did you first respond to it?
Well, you know, we both had very different responses at first when I was initially diagnosed, you know, it was when the doctor explained to me what the prognosis was.
It didn’t. Rather than a whole lot, because in that moment, I wasn’t experiencing the drastic symptoms, that was part of the future.
So I thought to myself, well, I’m not there yet, so let’s go out and do stuff right now. So even leaving the doctor’s office, I chose to take the stairs since the elevator because the doctor had explained someday that wouldn’t be an option as I’d be living in and out of or I’d be living in a wheelchair. And so immediately that’s when I got online, found Kyle and just started to figure it out.
OK, what am I going to do for the next five, 10, 20, however long I have before that day comes? And of course, Kyle’s response was a little bit different.
I don’t know if you want to share maybe how long it took you to kind of come around.
Yeah, that’s a good point, because, you know, I, I always say in high def told Sean so many times that I have so much respect for him in the way he’s taking this on, because it took me about two years to even be able to talk about it with my parents just because it was such a big weight on me and I was only 17 years old. And so, you know, here Sean gets diagnosed in like two weeks later, reaches out to me and we go to lunch, you know, and he’s like, all right, let’s do this take this thing head on.
So, you know, everyone approaches things differently.
And, you know, we are hopefully headed in a similar direction now because we have each other to lean on and we’re trying to make sure that we accomplish more than, you know, what is just handed to us in life as far as diagnosis.
I love that both of you have decided that you’re not going to. To put it bluntly, you’re not going to die from this, you’re going to live with this and you’re going to thrive with this, and, you know, you keep finding ways to do new things. And you talked about first while you were doing this bike race and now looking at some of the pictures and looking at what you did, movie, the attacks in movie, this documentary that will have a link to folks or people to check out.
But it looks like you do a lot of bike races. It looks like you tried to a lot of activities raising awareness and more than just raising awareness, it looks like you do it just to stay active, stay out there and, you know, keep living. Is that a fair assessment of how you look at it for me?
Yeah, I think, you know, awareness and fitness and all, that’s all great.
But I just love riding my trike and I love going places under my own power, you know?
And if that means fitness and awareness and in motivation for other people, that’s incredible.
But I just love it in your work together, right. In your journey together. You also have launched a charity. And usually we talk about everyone’s, you know, big cause later on in the show. But I think it’s a it’s a big part of what brought you to to doing this podcast. Tell me a little bit about determinants, which I guess, Shaun, you officially founded, but Kyle, you’re very active in when you give the word charity.
I feel like there’s there’s a bunch of different irons in the fire for us.
You know, Kyle mentioned probably I guess he was around twenty five when he did. Finally, he went out on his bike with his family and did that cross-country ride and that’s when we connected. And then from there he started some events and eventually became a nonprofit. And then a couple of years after my diagnosis, I had launched one too.
So the idea behind Determinates is to do kind of what Kyle and I have done ourselves really is designed to help people jeopardize, you know, whose physical or quality of life is jeopardized by disease or disorder.
Can I get out and accomplish something like Kyle said, do something under their own power?
So the idea beyond determinants, I sometimes think of it as make a wish, but instead of sending people to Disneyland or backstage concert, really help them complete marathons or simple neighborhood ten days, ah, climb mountains or do something physically challenging that they’re conditioned says the public can’t do on their own. We put together a team and help tell their story and help them accomplish and feel the power of reaching the peak of the mountain or crossing the finish line.
And just so we’re clear, determinates is not restricted to just those with F.A. Friedrich’s attacks. You’re right. This is for anybody with some sort of compromised, like I said, physical or, you know, other disabilities. Correct.
And I’m glad you make that distinction because, yes, that’s a huge commitment on our part to help all walks of life when it comes to disability or disorder.
So absolutely. Yeah. And that’s kind of the same thing with our podcast, too. You know, I’m sure I have the same disability, but we love to learn about all different kinds of disabilities in the people behind them, because one of the things that I think about is that I’m Kyle.
I’m Kyle with the FAA, but I am not FAA.
Right in my disability is something almost a separate entity from who I am.
And so we love learning about all these other disabilities, how people are dealing with them and living their lives beyond the circumstances that they’re dealt.
Let’s fast forward a little bit. Right. So you guys connect, right? You put together activities. You both put together these foundations. Right. It seems like you kind of merge efforts on the determinants brand. And then fast forward to twenty sixteen. Sean, you were telling me earlier and that’s when you decided, let’s launch a podcast. What was that decision all about. Right.
Like why after all this is said, like we should do a podcast. Like why not.
That was Kyle’s idea. So I’ll let him tell a little bit of the backstory.
So I was actually watching the documentary that you mentioned that both Sean and I are in and I was watching that for the, you know, thirty fifth time in the theater.
I, I love watching it.
And I loved the I I got seen in a theater so many times, but I was watching that in.
Sean has some really powerful monologues in the documentary and I was watching and listening and going, oh my gosh, we need to talk about this.
Kind of stuff all the time, like on a regular basis, and so I had been on a podcast and it actually wasn’t great quality.
And so I was like, I think we can do a podcast so we could be better than this one, you know? So that’s kind of that’s kind of the combination of thoughts that brought us to, you know, figure.
And, you know, I called up Sean and said, hey, where do you think about this? Should we give it a shot in chum’s? Like, Yeah, let’s do it. Like, always didn’t even think twice.
And before we jumped on, you were saying that you guys were you lived close to each other and then moved away. I assume that part of doing the podcast also was just a great way to stay connected. I know even in my early days, one of the first podcasts I ever launched was a colleague of mine who I used to podcast with once a week moved to the West Coast. We’re like, Oh, we’re never going to talk. We’re like, well, we’ll just do a podcast.
We didn’t care for anybody. Listen, this is a great way for us to, you know, talk and stay connected. Like, was that a piece of it as well?
I think so. I mean, you know, when we first went to lunch together, when we first met face to face, we’re like, all right, let’s do big things like let’s think big and execute. And I think this podcast is part a continuation of that thought, don’t you think, Sean?
Yeah, I would agree with that, although I don’t know if that was the initial one of the initial motivations, but we have certainly become quite close just in the last four years, have done the podcast.
And I’m grateful that we’ve been able to connect in a lot of different ways via the podcast.
So what was the the true mission right. When you decided, all right, I was on a podcast, I think we could do a better job. What did you set out as the initial mission of that podcast? Right. What was the reason for two disabled dudes and what were you hoping to provide the audience?
There is so much shame associated with disability. And when we simply talk about it with each other and realize that we’re able to laugh, maybe not, but our disabilities. But like, there’s other stuff to talk about. Right. And. I think that that was one of the initial motivations we talked about that a lot in the beginning, is when you talk about these things out in the open, it takes their negative power away from your life.
And I think we wanted to kind of do that in just the exercise, that muscle, I think to to add to that, besides the shame that so many of us feel either ongoing or at least initially, there’s so much loneliness that comes with such a diagnosis.
Right. It’s it’s one thing for the doctor to tell you you have the flu or bronchitis. Right. Illegal, whatever. I take a few things in and I’ll be fine in a couple of weeks.
But when you’re up against something a lot more dramatic or significant or painful or rare, you start to feel like you’re all alone.
And there’s it’s really hard to connect and find community. And we found that to be incredibly true.
And also it just from the film itself and the connection that we were able to make around the world because people began to see the film and know, you know, they were inspired to get out and do things.
We knew that we had to continue the conversation because all across the globe, there are people that still feel alone.
And unfortunately, we let our circumstances too often keep us sitting on the couch or hiding in the dark. And our mission is to help empower people to move beyond those those parts of life.
Have you found success in doing that? Do your does your audience, the your fans provide you with feedback that says more than just talking about perseverance and disabilities and, you know, everything that we can do. Do you find that people really just respond and say thank you for, like, the camaraderie? Right. Thank you for just hanging with us on, you know, on this podcast.
Absolutely, yeah, one of my favorite pieces of feedback actually came recently, and it was from somebody you’ve had on your show before you featured.
She has a young child that has a rare condition, he’s very young, but her feedback was she’s really grateful that her son, four or five years old, has role models that are in this positive mindset of making the best of life, no matter how the cards were dealt. And that’s encouraging.
You know, I’m you know, I joke about being rich and famous.
And I know a podcast probably isn’t the channel for that, but having the the ability to encourage people to get out of bed every day, that’s been incredible.
And we get feedback on a regular basis.
I would say to the rich and famous thing out there, to those listening is podcast is not a get rich quick scheme. It can be a way to make good money.
It absolutely can of takes time. It takes patience. It takes perseverance. So, you know, while we’re kidding about being rich and famous, it is possible. But you don’t wake up tomorrow and think, oh, I’ll start my podcast and like GameStop stock, I’ll be, you know, going to the moon with like that’s not how this is going to happen, but you can absolutely do it. And so along the lines, right. What were some of the early challenges, the actual, like, technical challenges of your podcast that you guys ran into?
Because you said you did a podcast, you thought this wasn’t so great, but like, so what did you do early on to give you better quality, better consistency, better production? How did you kind of overcome that stuff or did you have a background in this challenge?
No one was neither one of us had any clue where to begin. We were just both willing to figure it out as we went.
And I would say one of the biggest challenges that we didn’t know about in was that we’re not in the same location. We’re three hours apart, too. I think that’s a big thing, is the time difference and just scheduling and whatever.
But actually, we had no idea how to record to people in different locations. Right. And so it was a lot of Googling and just kind of figuring it out. We really, until recently, haven’t really had a mentor or anyone to talk too much about podcasting or especially the technical aspects.
And so, you know, that was challenging. A lot of it was just figuring it out on our own and reading stuff and learning from other people.
I’ll give credit to to another friend of ours who also lives of the FAA.
You know, I’m in California and Kyle’s in Pennsylvania, and this friend of ours lives in New York.
And his background was audio producing for bands and music and all kinds of stuff like that. So we had reached out to him and said, hey, we have this idea, but we don’t know what to do. Can you help us? Can the edit can you tell us what we should think about?
So although he didn’t have a lot of experience and podcasting, he at least had some experience in different audio platforms and microphones.
And so he kind of helped us fumble our way through the first couple of years.
And for two guys who operate a show under an organization called Determinants, I feel like you were going to figure it out. It feels like it’s just part of the namesake, part of the persona that the two of you hold. So as you’re telling me, you do operate the show under this five Wannsee, three determinants of link to them to determine its outcome. But what was the thinking there about putting the show onto the five or Wannsee three, or what have been the advantages of doing the show via the nonprofit?
We wanted to be a separate entity, but we also didn’t, you know, both count.
I have full time jobs and a bunch of different side hustles, if you will. And when it was time to sort of make the podcast official and they give them, one of us had the energy or were willing to put in the time to form a, you know, an LLC or partnership or an incorporation or whatever.
So it just made sense that part of one of the aspects of determinates is to be educational and to encourage folks.
So it just made sense that we could fit in there and also still continue to be involved on the charities side of life. So if somebody wanted to donate, they could have that tax deductible kind of benefit and things of that nature. So it just sort of made sense in that season. Because so many of the people that listen to the show are in the CausePods space, right. A lot of them are doing it as a small side project, but more people want to take it seriously.
I’m curious, as folks who founded this five Wannsee, three organized events, what are some lessons you learned about getting a five twenty three or starting a nonprofit that you think would be useful for for folks who are hearing this and thinking, you know what, I should do it to?
You know, I feel like we’re still in the infancy stages of determinants. There’s it’s been a slow foundational establishment.
But early on we had raised a little bit of money and hired professional help, a lawyer to help kind of put things in order.
And I have never regretted the pennies or that, you know, all the money spent in that arena. So for me, I would encourage folks to go the route of getting established with some professional help and then from there get creative and, you know, work with your own elbow grease, if you will. But I think that beginning stage of making sure it’s done, done right, done well, and without any records maybe of a letter coming in the mail saying you owe somebody several grand because of something you forgot to think about or something I didn’t realize.
For me, it’s a good place to start. So with the podcast, two questions I want to ask you one. And you know, either one of you could take both of these or one at a time or whatever, but I guess I would say is what has been the biggest. Lesson of having a podcast that you would share with others and then also what has been the most memorable takeaway? Right. Like when somebody says to you, what’s been your favorite part about having the podcast?
Is there a moment to show a connection, something that always stands out to you like it would all have been worth it for?
Just this one sticks out right away to me.
And I don’t know if it’s the same one for Sean, but I think the thing that we both love to do. Yeah. We love recording it each week, but it gets whatever and but we love being on stage. We’ve had the opportunity to do a few live shows and we did one in San Diego one time. And Sean looks over to me. It was like it was like five seconds before we’re going to go live. And he goes, I feel so unprepared in bovver.
Our hearts are just like pounding out of our out of our chest. And it’s just so, so much energy and craziness in the room. And then ended up being an incredible, incredible show that we did. And, you know, we had three other really, really great people that we’re still friends with that we interviewed on stage that also have Live with Regis. And that was a really cool thing that I’ll never forget.
You know, on top of that, I would say one of the bigger lessons or takeaways for me has been you really or at least me.
I never know what somebody is up against here and people story. You know, we hear a lot.
You never know what other people are dealing with in their own life and doing this show.
That’s a constant reminder that I have no idea what other people are up against.
So if I can keep that in mind or keep that in perspective, that hopefully makes me or allows me to be a little more gracious toward other people and even a little more gracious to myself, because there’s always something hard for each of us.
It might be a different level of hard and might be a different style of hard, but and there are hard things in life.
And I’m encouraged to remember that there’s always a reason to get out of bed no matter what you’re up against.
And seeing other people do just that tells me that you’re on the right track.
That is a great way to put it. Just a lot of people think the podcast has to have some sort of massive output, right?
It has to make us rich and famous. It has to sell a bunch of courses. It has to launch a brand that becomes, you know, the next teszler or whatever nonsense people think about.
But sometimes it’s just there to be. Sometimes it’s just there for you, right?
Sometimes it’s just there to stay connected to somebody else. Sometimes it’s there to network with other people. Sometimes it’s just there to be a friend for other people. And I would say in your case, it’s probably also just to inspire some folks. Maybe we’re not inspiring millions, but I’m sure if every episode inspires just one person, you guys sleep well at night knowing that you’re doing something worthwhile and something that the world needs right now. I mean, in the beginning, we had a conversation and we’re like, all right, if three other people, you know, find this conversation like Shawny, we’re going to have a conversation here.
And if somebody else finds that valuable, how awesome is that?
Right. And so we both committed early on, as long as one person is listening and extracting value and as long as he and I are still having fun, we’ll keep doing it.
So far, it sounds like you’re both having fun, at least on this show. You sound like you’re still very friendly to each other. What would be the number one lesson or the number one piece of advice to someone listening who has their own calls and thinks that maybe podcasting is the right way? Right. Like specifically using this medium. What would you say? You know, a reason why to use it and then something they could take with them so they don’t make the same mistake that all of us have already made doing it.
My piece of advice is the thing that causes people to make mistakes, because my thing would be get started, make mistakes, and but also be open to the fact that you’re going to make a lot and and you got to listen to others who have done it before and constantly try to improve.
But you have to get started today. What about you, Sean?
You know, I would say in addition to starting, you know, I get going reach out to other service, you know, where that we have found a service, a lot of rare disease people that are doing the podcast saying and just even if it’s just one question here and there, being able to take advice or hints or tips and tricks from others, I encourage you to email him up on social whatever you can do to kind of pick brains of people that have been there before or maybe have done that already.
I think landing on each other, the nature of what makes. Life better, right, that collaborative spirit, so reach out for a little bit of help along the way.
And as they were alluding to earlier, Effy Paksas, I believe we were talking about earlier, who helped you guys out, who connected us, previous guests here on CausePods and not to self promoter to my own horn. But, you know, we featured a whole bunch of folks who have talked about rare disease and disabilities. And I have a podcast for their cause. And most of the people who we’ve spoken to would also be happy to help out.
So you don’t have to listen. I don’t need the downloads or anything, but just go through the archives, see what other shows are out there. And like the guy said, reach out, connect, thank them, tweet them, whatever. I’m sure they’d be happy to, you know, to lend out. And same here with Sean and Carl. We’re going to put links to their website, the show on Apple, Google, Spotify. We’ll put links to determinants as well as their social media.
And as always, we will encourage you to check out Determinates and if you can make a donation, doesn’t have to be big. Sometimes the best thing you can do is just show that more people want to support it, even if it’s not thousands of dollars, although Sean does need to keep up that gold Kernen lifestyle that he’s living in. So, you know, we’ll have a link to Determinates and we’ll have links to the Facebook accounts for two disabled dudes.
We’ll put in the Twitter accounts for Sean and Carl so you can reach out to them and connect with them, ask them questions, ask them advice. And of course, you can always reach out to me and connect with me if you have questions. But Sean and Carl, this has been a great conversation. I am so glad that we were connected. I should also mention and check out the movie Ripia Taxi and Movie. It looks like a very, very cool project.
And you can find it on, you know, most of the the top streaming services that are out there, Amazon, Apple, Google. Right. The usual places weblink to it as well to make it easy for you. But Sean Nichol, thank you so much for taking time to tell your story, talk about your show to champion your cause and honestly, just to stay positive and stay optimistic in a world that is so easily beating the rest of us down for no reason and certainly is giving you guys more excuses.
But just so you can rise above it and stay positive, I think we can all learn from you guys. So thank you so much for being you and for chatting about two disabled dudes and coming here on CausePods tonight.
Thanks for having me. So it’s been a pleasure.
Thank you for this conversation and thanks for what you do for this podcast. Making a big impact. Appreciate it.
Thanks for listening to this episode of CausePods. If you’ve been inspired by the work of our guest, please check out the show notes of this episode in your podcasting app or at CausePods.org. There you will find links to their show, their website, their podcast, links on Apple, Google, Spotify, as well as a link to support the charity that they highlighted here. In this episode. You will also find a CausePods.org boet to subscribe to this show on your favourite podcasting app, How to sign up to be a guest on this show and a link to our Facebook group, which is going to have special resources just for the folks who are podcasting for a good cause.
And I can tell you right now, we’ve got one great deal from our friends at Pod Page, but you’re only going to learn about it and get that special deal if you are a member of the Facebook group for CausePods. And before I go, I should say thank you in particular. The show is edited and produced by Ben Killoy of the Military Veteran Dad podcast and what a great job he has done. And all this is made possible because of the great support that I received from Shannon Rojas here at the podcast Consultive Dotcom.
Once again, if you want to learn more, go to CausePods.org. Thank you so much. And we will see you next time on CausePods.