Tyler Lima-Roope, a content creator and advocate from LA, joins host Emily Hessney Lynch for the second episode in our Rare Disease Month mini series. In this conversation, we talk about what it's like living with a disability, when Tyler first knew he was different from other kids, meeting his wife online thanks to going live on TikTok, health anxiety, what he's lost as his SMA progresses, and the strange, bittersweet feeling of learning about how younger kids with SMA are getting treatment faster now.

We also dive into Tyler's career as a content creator, exploring how the wasteland of weirdness on TikTok Live during COVID inspired him to start creating content, the pressure of not squandering your platform even when you need a mental health break, making content you're proud of, giving people grace online, and how he wants to branch out from disability content to talk about other topics. It was a thoughtful, enlightening conversation—and a funny one too! Tyler's cat made an appearance for a portion of the recording session. We hope those moments bring a smile to your face 😻

Links:

1. Tyler's video that we discuss in the episode about playing musical chairs at a birthday party as a kid.
2. How to Prepare for Natural Disasters if You Have a Disability, New York Times article Tyler was featured in
3. Check out Tyler's TikTok, Instagram, and website.
4. To learn more and support the SMA community, check out Cure SMA!
5. Missed the first episode in the Rare Disease Month mini series? Catch our interview with child neurologist & dad Sam Mackenzie here.
6. Emily's Instagram & website.

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I'm sorry. My cat is...

hello Kitty!

Choosing now. And you know what? I'm all alone in this room, so if she steps on a button and turns my computer off, it's going to be a minute. Oh, my goodness. Hello. Please move. Do you only see her butt right now?

Basically, yeah.

Yeah. I'm sorry. Are you sure it's okay for me to talk while this cat is right here?

Yeah, no, it's fine.

Okay. Oh, my God. I had to tell my parents. I'm so sorry. This is horrible. How unprofessional.

It's a very professional cat. I'm not worried about it at all.

Hello and welcome to It's a Lot, a podcast about things that are a lot. On this show, we have honest conversations about the highs and lows of social media, parenthood and more.

When it comes to complex topics, online discourse can lack nuance and empathy. That's why we're leaning into deep conversations, making space for conflicting, messy feelings and keeping it real about how we feel.

We could all use a little more of that sometimes. I'm your host, Emily Hessney Lynch, and today I'm excited to be chatting with Tyler Lima-Roope.

Tyler is a content creator, consultant and speaker who's based in LA. He shares relatable funny stories with nearly half a million followers on TikTok and brings important conversations about the disabled experience to the forefront. He is such an engaging storyteller that I've used his videos as an example in the college social media class that I teach. True story!

What?! Sorry, we'll get into that.

Okay. Tyler has spinal muscular atrophy, or SMA, which he was diagnosed with around 2 years old. And today will be be diving into what life with SMA looks like, things you might not know about living with a disability, his journey as a content creator, and so much more. You can follow Tyler on TikTok or Instagram @TylerLimaRoope, which I will link to in our show notes.

I'm really looking forward to chatting today, so welcome to the show, Tyler!

Thank you so much. I'm excited too. This is definitely a much needed break from a very stressful day. So honestly, I'm open to talk about whatever you want today. Let's just go for it.

I'm hoping it'll be a lot less stressful and more enjoyable. The video I shared with my students was the one about going to a party as a kid and the musical chairs game.

That was a fun one to tell.

That was a big hit.

That's one of my favorite ones.

Every time when you do the, that, the dad does that face, that cracks me up so much.

That was a really good, honestly, it's a good memory. And the good memories are the best ones to tell because that's such a joy to tell these stories sometimes. Others are a bit more of a bummer, but some, some make me laugh and those are my favorite to share.

I'm sure those resonate with your audience a lot too.

I hope so. I know that it's hard to imagine people actually listening to me blather on about whatever, but I hope it does.

Well, I'm curious what an average day in your life is like right now. What does being Tyler entail these days?

Oh boy. What does being Tyler entail? It's hard not to talk about the disability. That's always the first thing that comes into my mind. As you mentioned already, I do have spinal muscular atrophy, type 2. And for anybody listening that is unaware, essentially. Long story short, I...my voluntary muscles are diminished and they atrophy over time.

So all my life, because I have type 2, all my life I've been in a wheelchair. I needed help with, you know, rolling at night or going to the bathroom or eating food.

Pretty much any, like, basic necessity that requires physical effort. I require somebody to help me with that. That being said, from the moment I wake up to the moment I go to bed, I have people around me. I have a village. I live with my wife and my family that I grew up with, and my parents help out and I just get through it, I guess, with the help of those around me.

In terms of my day to day though, I. I wake up, I have coffee, I do all the normal things people do. Brush your teeth. And of course I have help with all of that.

And then, you know, whatever the day takes me, I'll go out for coffee or do some work or however, whatever I have to do until I can feel like it's an appropriate time to get into bed. And then I get into bed and go on my computer, play chess, do whatever I do and go to bed. And then I wake up, repeat.

Is your cat part of that support team?

Of course my cat is part of the support team, yes. Her name is Galinda. She does very important things like scratch me and beg for food, which gives me purpose to get out of the bed every day. Absolutely.

Animals are great like that. So as a little kid, what were you like? I know as an adult, your humor is like a big part of your personality. I, I'm guessing you were a pretty funny kid too?

Oh, it's always I. I've been told that I'm funny, but I don't know. I guess the data does suggest that, but I, I do not feel funny. I don't know how to describe that, but yeah, as a little kid I, I always use humor to cope, unknowingly or not. And it started out, I think with pretty surface level, "haha, I cannot walk" jokes.

And then over time I think it evolved to more of a reflection of what I go through and kind of pointing a mirror to the way people react to me having a disability.

What were some of your hobbies or interests when you were little?

Oh man. baseball. I love...obviously not playing, but sports. I'm a huge Cincinnati sports fan, so my friends and I actually my class growing up was pretty amazing. I would play cake ball and baseball with them at recess, at lunch, and somebody would kick for me and I'd be able to go around the bases.

And sports I think were my main, my main passion growing up. I had a Make a Wish when I was 10 and I met the Cincinnati Reds. That's one of my fondest memories. Definitely.

You know, sports, all the, all the normal kid things. Video games, baseball, Star Wars. That pretty much honestly sums me up as a kid.

How did you become a Cincinnati fan since you live in California?

That's everybody's number one question. My dad is from Cincinnati and so growing up he was a pretty big fan. But I think I latched onto that pretty hard as soon as I could and it feels like my hometown team. I still have a lot of family that lives in Ohio, so I feel pretty connected to the team, especially after my Make A Wish. I mean, it was no going back.

I formed a really special bond with that team.

That's really cool. What was that experience like when you went there for it?

Oh, wow. Oh man. I get chills even thinking about it. I'm sure. I don't even know. I'm sure it wasn't as glamorous as even I remember it, but I mean, they gave me my own uniform and they took me on the field and they let me watch like two games.

And one of the players, his name was Jay Bruce, he took me around, played catch with me a little bit, showed me what was what took me in the locker room. I mean, it was at the time, it was these larger than life heroes that I was able to meet.

And I still get chills because I think I still feel what it's like, to be that little kid in the locker room, but, man, it was. It was the greatest moment.

That's amazing. It's hard to hold onto those little kid feelings sometimes once you're an adult.

it's so hard. Especially when the Reds, like, finish in last place and I'm, like, 28 and I'm, like, upset, and I'm like, "I hate this team!" But then I wake up and I, you know, I watch and I root for them. It's impossible to leave.

Sounds like being a Bills fan here in Western New York.

Oh, yeah, probably. Probably a little similar.

So I'm curious, when you were younger, what was, like, one of your earliest memories of realizing you were different from other kids?

And, oh, man, I tried to think about that before, and I think my main takeaway from trying to dive into when I realized I was different was that people around me did a really good job helping me feel included. I don't remember being bullied or feeling like I couldn't do anything.

I didn't know always that I needed extra help, but I don't remember as a kid thinking too deep into it. I had an amazing support system around me. I knew I was different. Other kids knew I was different, but I think because I also met them so young, it kind of just became, "oh, yeah, he's in, he's in a power chair." And not really too many questions about it, if that makes sense.

Yeah, it sounds like your parents must have done a great job navigating all of that. I'm sure it was hard for them and, like, the other adults, too, like, making sure the kids were, like, totally welcoming and inclusive and treated you the same.

Yeah. My two best friends I met in kindergarten. My elementary school and middle school was a K through 8th, and it was a tiny school. Same 30 kids throughout. And my two best friends to this day, I met in kindergarten at that school. So their families have become my family. And I honestly, I got lucky.

I don't hear of a lot of people who are still friends with, like, their kindergarten besties. That's pretty incredible.

I know.

I have thought a lot about, like, my son's early treatments for his SMA and how he'll, like, never remember them because he was so little. But I'm curious what your memories are like in medical settings from a young age.

I remember going to doctors pretty often just to check in. Every year I would go to Utah, actually, because there was a. A doctor there who knew a lot about SMA. So yearly I would go there and do a bunch of tests and scans, and I think they were collecting data or whatever, what may have you for whatever they were doing? Actually, I don't know, I never thought about that. But I. I did see them once a year, and it was just a normal part of my life.

I think I was never too concerned with my health, probably to a fault, as it showed growing up. But my. My childhood, going to the doctor was just kind of a part of life. And I had good doctors too, so everybody was very supportive.

And nobody ever told me I couldn't do anything. They just told me what I could do. Which again, has its pros and cons, but kind of similar with my first memory of being in a wheelchair, disabled. It was just kind of part of my life from ever since I can remember.

And were there treatment options when you were a kid or when did you start being able to get treatments that, like, truly helped?

No, my. My doctor, when I was born, didn't even know what SMA was. My parents actually had to get a second opinion from another doctor after pushing because I just wasn't progressing like other babies would. So I wasn't diagnosed till I was two. And at that point in time, there was no cure or treatment or anything.

And honestly, from that moment on, my mom became extremely involved, led many walkathons and fundraisers, a bunch of stuff to raise a ton of money for SMA research. And it wasn't until I was 18 or 19 that I heard rumblings of the first FDA approved SMA medication.

Your mom sounds pretty awesome.

She's great. Yeah, no, she's. She's pretty amazing, honestly. She. She went through a lot and she did a lot, and yeah, she's pretty great.

Were you able to start getting one of those treatments in your early 20s then?

Yeah, I. I started on Spinraza and I did that for a couple of years. There were some complications because when I was little I had a spinal fusion. So my, my spine is essentially, I was going to say, so my spine is fused. What I mean to say is that there's not really gaps to get to my spinal cord because of that surgery. And you need to get there in order to administer Spinraza. So they had to do it in a bit of a different way, which over time I couldn't handle anymore.

And I switched recently to Evrysdi, which is another treatment for SMA.

My son was on that one for three weeks, so I know a little bit about it. Yeah.

What happened?!

He was getting gene therapy after that, so they did kind of a bridge treatment.

We'll probably touch on this more. And I don't want to dive too much into it, but, man, does it hit me that these, these kids out there are getting treated right away.

Like, it really is a very interesting feeling that it evokes inside me. We don't have to get into too much because that might take the entire podcast, but it is crazy to hear how much it's improved since I was little.

And that newborn screening in all 50 states can test for SMA now, so families find out within like a week if their kid pass it. Or you can find out in utero if you do that genetic testing, which we didn't. So I was like, "I'll be too anxious if we do it. I'm sure everything's fine." Whoopsie!

Yeah, well, life comes out you fast, I guess.

So this is probably a good point to highlight that it is a lot like it sounds like all of this was so much as a kid in your teens and twenties, like, how were you dealing with all of it mentally?

Oh, boy. I wasn't for a long time. I think. I. It's safe to say that I poorly managed it in the sense that I didn't want to give it any thought. And it wasn't until a few hospitalizations and the SMA progressing that I really had to kind of face it a little bit more.

I never really wanted to be involved in any of the fundraisers that I mentioned earlier that my mom put on or talk to other kids with SMA about their experience. I had my friends and I had my circle, and to me, that was enough at the time. And maybe it was. I'm not sure.

I don't know what the alternative would have been. But growing up, it's definitely the reality of. It hits me more and more every day.

What are some of the things that you've lost, like, the ability to do, if it's okay to talk about that? just to, like, illustrate to people what it is like.

I've lost the ability to do...well. It's so hard because technically the list is super long, just because I've gotten weaker over time.

So anything from scratching my own nose or holding my phone in a certain way or feeding myself even, has been hard lately. And it's gradual. It's gradual. So all of a sudden, I realized that I'm not where I was.

And that's why this medication is so important to me, because it provides me with a sense of security and stability. And I have been stable ever since starting the medicine. Really.

I'm a little superstitious, so I don't want to get into all the great things about it, but it's something else. I'll say that. It's something else.

How long have you been on that Everysdi one now?

Oh, boy. I think two and a half years. Okay, three years maybe. Yeah. I was on a. They had an oral solution for a while, and then they came out with a pill form. So I switched to the pill, which has been, for me, pretty amazing.

That's cool. Our son had to take the oral one, of course, because he was teeny tiny and trying to get, like, a syringe into the mouth of a baby to, like, swallow this medicine was really hard.

Hey, can you remind me? Because I really. I was honestly a little floored when we first talked because I just hadn't really thought about little kids with SMA in a while. Your son is how old now again?

One and a half.

One and a half. And he's doing great.

Yeah, yeah. He has type 2 also. He has three copies of the SMN2 gene. I don't know, like, how many copies you have or how much you've learned about that?

Yeah, the SMN2 is, like the backup one, so that, like, helped him already, but he's, like, walking, running, dancing and everything. He got the gene therapy at about a month old, so...it's doing what it's supposed to do.

That is so incredible to hear. Yeah, that is. And wow, there it goes again. It really hits me in a weird way because, like, I'm where your son was, you know, and it's just crazy how fast these things move.

The one thing that I sometimes worry about is that they only have, like, kids are 8 or 10 who got the earliest versions of it. So you don't know if it'll wear off when they're like, 20 or something. But I assume the science will keep advancing, hopefully, and I imagine...

They better! I mean, man.

Well, you know, the gene therapy just got approved for kids older than 2, for adults as well. Have you thought about getting gene therapy yourself?

Yeah, I was actually supposed to talk to my doctor yesterday. I had an appointment scheduled, but they actually canceled it because he had an emergency procedure.

So not sure what that's about, but I'll make sure to ask them when I see him next week. But, yeah, we're going to discuss that option and what that entails, what that means. I personally don't know a lot about it.

So, I was hoping to know a lot about it today, but I haven't been able to speak to my doctor.

It'S so interesting because they send a synthetic version of the gene into your body basically with a virus, and you're like, SpiderMan.

I would love to be SpiderMan, actually. That sounds great. I get so excited. I think about when I hear these things that I. I don't know, I just. It hits me. It just hits me.

Yeah. No, it. Our son's neurologist was on the podcast as well, and he was talking a little bit about the new gene therapy, and he said that there is a percentage who do see improvement on it, actually, in addition to people who are just staying steady state. So that's really cool as well. Yeah.

For adults?

Yeah. I don't want to, like, get your hopes up or make any guarantees. I'm not a doctor! It was like 25%, I think, that saw improvement.

Okay, well, that's cool. Yeah. I don't even know how it's administered. I don't know anything about it. Is it directly in the spine?

For my son, it was an infusion in the arm. So he had an IV in each arm and it was an hour long. It was like 19 milliliters of liquid. It seemed like magic.

Golly!

But yeah, crazy. The nurse came in with the little vial and was saying to everyone, like, "be so careful with this. This is worth $2 million. no one can drop this."

Wow. Oh, my God.

Yeah.

Man. That is. I was. Wow.

I know when we spoke before, you mentioned a therapist that you talked to. So can you share a little bit about, like, your experiences with therapy when you started that and how. How it's helped?

It's helped a lot. I recently, especially the last year, actually, I started therapy because of just being a self conscious teenage boy around girls. So that's why I started therapy. And ever since then, it's now evolved to severe health anxiety that consumes my therapy sessions.

And that's pretty much my main thing I'm working through right now. I think it's a mix between things around the world going on and family health stuff, as well as my own internalized fears about SMA and its progression. I think there's a lot. There's a lot I've been through in terms of doctors and hospitalizations and health scares.

And I think the body kind of holds onto that and you don't realize that it's there and then something will happen and boom, it all comes back up in a way that you haven't experienced before. So it feels unfamiliar. And that's the sort of thing that I'm talking with my therapist about, talking to my doctors about.

I started medication and I've definitely been better the last probably five or six months, which I'm really proud of, and I hope to stay that way.

I'm so glad to hear that. Does your therapist, like, specialize in working with disabled folks at all, or did they have any past experience with it?

It didn't even cross my mind that that was an option to look for a therapist who specializes in it. Because it's been the same therapist since. Since I was 17. Being worried about asking somebody out to promote. I just stuck with her.

She does not, though. Long story short, she does not specialize with it. But I think she's learned a lot through working with me.

And I've thought about looking for the options of maybe a therapist who is disabled or something of that nature, but so far, no. I'm sorry. My cat is hello Kitty choosing now. And you know what? I'm all alone in this room. So she steps on a button and turns my computer off.

It's going to be a minute. I'll say that. Be good, Miss Kitty.

I think I even warned you about this possibly happening. You can always blame the producer instead of the cat. Yes, exactly. Oh, my goodness. Hello. Please move, Galinda. This is Galinda.

do you only see her butt right now?

Basically, yeah.

Yeah, I'm sorry.

No worries. Well, speaking of the anxiety about asking someone out, I want to learn about, like, how you and your wife met through social media. Like, did she just slide into your DMs one day and now you're married? Like, how did that happen?

You know what? Technically, yes. It was pretty recently after I started. Are you sure it's okay for me to talk while this cat is right here?

Yeah, no, it's fine.

Okay. It started after I posted a few of my TikToks. One of them went viral and. Cause I started just posting for my friends. Oh, my God.

One of them went viral. And I think I got like 30,000 followers overnight. And so when that happened, I was like, okay, maybe I can do this. Maybe I'm good at this. I'll keep it up. And then I started to go live on TikTok as a way to kind of grow an audience and she would join my lives. I didn't know she was there.

And then I got a message on Instagram because I was asking around for a graphic designer to design some merch for me at the time. And she told me she was a graphic designer, set up a call. And that call, we stayed on the phone for five hours. And from that night, we taught every day because we were long distance. We talked every day until she officially moved in with me.

Wow. Did you meet in person at all before moving in together?

Yes. So she's from Brazil, and we talked for four months, and then she bought a plane ticket.

And I was really nervous because I'd never really been in a relationship before, and I had to, like, oh, my God. I had to tell my parents.

I'm so sorry. This is horrible. How unprofessional.

It's a very professional cat. I'm not worried about it at all.

Are you sure it's not a problem?

It sounded. Still sounds great!

We don't post a full video version. We just post clips. So.

Okay. So sorry. So she's from Brazil, and we talked for 4 months, every single night until she bought a plane ticket. And I've never been in a relationship before. I've never talked to my family about, you know, love or any of these concepts. So I was really kind of nervous.

And I actually was on a call with her, and I live with my parents, so I called my mom in to say hi and to meet Maria, and they hit it off over the phone on FaceTime. And Maria came out, stayed with me for two weeks, flew back, and then that started our long distance of flying back and forth.

So she flew out, I don't know, a total of four times in two years, stayed for various lengths, and then we decided to make it official, get married. And that was now almost two and a half years ago we got married. So it's been quite the journey.

I didn't know she was from Brazil! So that's a whole other layer to navigate. With the international too

it was already hard trying to figure out, like, can I get married? What happens if I have a spouse? How does that affect my insurance or my potential income requirements?

And then to add on top of that that it's an international marriage, and all of that paperwork is one for the books. But we did it. We hired all the right people, we talked to all the right people, and it was always kind of a certainty that we would figure it out.

And we did. And honestly, the hindsight, I can't believe we were able to go through all the bureaucracy that we had to.

I know you've talked about on your TikTok before how marriage equality is, like, not really a thing for disabled people. So how did you decide it was worth going for it and getting married, despite all the implications there?

That's an interesting question. Because I knew it was worth it the whole time. There was not a time that I was nervous about how, like, if we're going to do it, it was more, we need so much help from so many different people. I was worried she wouldn't be okay with going through all of the bureaucracy that was necessary, but she was on the same page as me, as this WILL happen, we just need to figure it all out. After countless talks with benefits counselors and Social Security administrative representatives and lawyers and everything else, we.

We just went for it, and we decided that we're going to make it work along the way and we'll learn as we go, because life is too short. Like I said before, I went to therapy for talking about relationships when I was a teenager.

So this has been a thing I never thought was possible for me, not even because of bureaucracy, just for being disabled. And so when I met Maria, I realized that it is possible, and I do deserve this, and I'm going to make it work. And we did.

She sounds amazing.

She is. She's pretty great.

Aww. Can you explain a little bit for our listeners who might not be familiar what the implications are of getting married for disabled people?

Of course. Sorry. I. I get so excited talking about the, the love part of it. I always get nervous because I'm afraid that I'm going to give some wrong info.

But the way I understand it and the way it's been presented to be is as somebody with a chronic disability, I require a lot of medical help, a lot of insurance, things that I could not pay for without insurance. And in order to receive this insurance, I am enrolled in SSI, which is Social Security. And in order to stay enrolled in SSI, I cannot make over, I believe it to be $2,000 in one month or have $2,000 in assets at any given time. When you get married, your spouse's assets become yours. So that is ridiculous. For obvious reasons. It is a massive deterrent for those with disabilities to get married. And the hoops that you have to jump through and the bureaucracy you have to navigate is ruthless. And it is possible.

But on the surface, what everybody will tell you is that it's not possible. And so it's very, very hard to push through that and say, no, there has to be a way. Let me figure this out. Anyway, it's, there's a certain amount of money I can have before I lose my insurance, all my help. And Maria's, Maria's assets count for that as well.

Yeah, that's ridiculous. Thing is, that's the hardest part. I'm so sorry, I think I just interrupted you. That's the. That's the most annoying part, I think about the government and disabilities is not necessarily this overt discrimination and representatives saying awful things about people with disabilities. It's a complete lack of anything. There's not even a talk about disability or how to improve the lives of this.

This group of people that anybody can join at any time and if they live long enough, will like that. That's not just a thing young people with chronic disabilities benefit from. It's your grandpa, it's your, your uncle, your aunt, your whatever, your friend, you. When you get old enough. It's a profound silence within the disabled, I guess bureaucratic movement. There's just nothing there.

With so many issues, it is depressing that it seems like people have to have it affect them personally for them to care.

And it's like it shouldn't have to affect you personally to care! Like we should all care about these things.

That's exactly it. It's really hard for people to care about anything, let alone something that they, they perceive as irrelevant to themselves.

I want to dive into your content creation work. I know you started that kind of back in Covid, so what was it that inspired you to start a TikTok account?

Honestly, it's funny, I was scrolling on TikTok early on and I was just with my friends looking at the different TikTok lives and I haven't been on TikTok live in a while so I don't know if it's bit little a the same, but back then it was wild. Like there was some weird stuff going on on TikTok.

What kind of stuff were you seeing?

Just the most peculiar individuals that. That's. That's what I'll say. Just very strange characters of people going on.

Now it's like QVC. Like everyone's selling stuff now.

Exactly. Yeah, that back then. No, it was not that. It was. It was like a wasteland or something, I'm not sure. But I told my friend, "I want to be a part of this. This is miraculous. And I want to go live." But you needed to have a thousand followers to go live.

So I just started posting and I don't know, texting friends, hey, follow me. I want to get to a thousand followers and just doing that sort of thing. And then one of my videos that was just pretty much for my friends got 3 million views, I don't know where. And I was like, whoa! Like, I didn't even know, like, that was possible.

And it's funny because going live is what helped me meet Maria primarily, and that was the reason for joining TikTok, because I wanted to go live.

But, yeah, ever since I started telling stories, which is mainly what blew up, I wasn't up to watching Covid, especially a little after Covid, I was still nervous. So I stayed inside, took walks, made videos, grew my audience, and four years later, now I'm here.

That's pretty cool. I can't believe the wasteland inspired you to.

It did. I wanted to be a part of this. It looked miraculous.

So how does making a video look different for you with your disability? Like, what goes into that behind the scenes?

Well, that does tie into an earlier topic of kind of what I've lost the ability to do. It used to be easier to make videos. I would set my phone up on either, like, a little contraption that attaches to my chair and holds my phone, and I can hit record, take a walk. And early, early videos were me outside, out and about, talking to the camera. And then as time went on, it got a little harder to film that way.

So now I just kind of prop my, my phone up and every video I make is the same. If you go through my TikTok, it's. It's horrible. It's just my face, like countless times, just over and over and over again. And that is because of my disability.

You know, I can't move around, talk, so I just kind of have my ankle that I'm comfortable with in the area I'm comfortable with. And I just. I just talk.

Nothing wrong with that, though. Like, consistency and your humor and storytelling, I think carry it really well.

I really appreciate that. It's definitely stressful at times, but I do love it.

I know you took a long break from TikTok this year. I'd love to hear, like, a little bit more about that, like, if it helped your mental health or what it felt like when you did come back, all that kind of stuff.

It was a tough time. We had some family health issues a year ago, and then the wildfires happened, which was also a year ago. And although we were not personally displaced or affected, we were constantly on the verge of having to leave. And I think that did a lot to me mentally because of the disability and because of what it would mean to leave my comfortable nest here.

I did an article with New York Times about this as well. Just having a disability in an emergency is a really, really hard and big crisis to think about.

And so, that being said, both of those things, all of those things combined set me in a pretty bad spiral. And making videos was the last thing I was worried about. I needed to get back to myself because I wasn't.

And the only good thing I did during that time was advocate for myself. I was not worried about asking for help or talking to doctors. In fact, I talked to doctors too much because I was fine the whole time. Turns out I had anxiety and it was rough. It was really hard. It was really, really hard to do anything.

And I know it's hard for me to talk about online because I feel like people have heard this, I don't know, countless million, billion, trillion times, the mental health struggles online. You know, it's not unique to me. But I will say that I've never felt that level of anxiety before in my life. And I thought I knew what anxiety was until. Until that hit me. So that's why I. I've been off. I was off TikTok for a long time, and getting back on was his own struggles.

I was worried people forgot about me or I'm irrelevant, or I didn't use my opportunity wise enough. There was a lot of failure feeling every day that I didn't make a video. And so it kind of snowballed.

And recently with the holidays, has also been a little hard. I haven't posted in a hot minute and I'm trying to make it so I don't fall into that trap again. But, yeah, I did take a long break. I did come back and it was honestly better than I thought it would be. I really am pleased with how the reception has been.

I remember you popped up in my feed right away when you came back and I was like, "oh, Tyler's back! Yay!"

Oh, that's really good to hear, actually, because that was a huge moment for me. I know I'm not this big Internet personality, but I mean, my last four years, that's been my quote unquote job. Like, that's been what I've been doing. And it all falls on me. I'm the only one doing it. I'm the only one giving myself deadlines.

And so when I don't do it for so long, it feels like, wow, you really messed this up, dude. Like, it's too late. Sorry. So it's really nice to hear that you had that reaction.

There are, like a handful of content creators that I check up on too, if I haven't seen them in a while. And you're definitely, like, on that list.

Oh, thank you. I really appreciate that.

The internet moves

If I haven't posted in awhile, there's something wrong.

The internet moves so fast that it's easy to, like, feel like you're falling behind or being forgotten. But we're all just humans out here. Like, it's rough.

I know, I know. Nobody's like, "oh, did Tyler post today?" but it does feel like after a certain amount of time, I missed the boat and it took a lot to push through that and go forward.

Anyway, I would love to learn more about, like, how you've turned it into a career and, like, the monetizing aspect of it. Like, I know you've done some brand partnerships. Like, how did those come about? What was that like?

Honestly, I just was emailed by them. I never looked for partnerships before. Recently, I've been trying to dip my toe in, like, reaching out and tried to make things happen. But I was scared to earn money for a really long time. Like, I was literally scared to earn money.

And as, like, an adult who wants to get married and live a life that, you know, hopefully is long and prosperous, it's. It's a lot to think about and very intimidating.

So when I got my few, my partnerships, it wasn't much, but the feeling of making anything, even though I had to report it and call a random stranger and tell them that I made this money, and then they have to put it in the system. And then two years later, I get an update on the case. Anyway, I. I felt good. I felt, like, productive.

I felt like I can do things and support people around me again. It's not anything to write home about, but it was something. And that's really only partnerships.

I know that TikTok has a TikTok Creator Fund, but that doesn't. That doesn't pay anything. Like, you need to get millions upon millions of views consistently to be able to say that you are profiting a meaningful way. So it's really just the partnerships. It's been cool.

MTV and Cashapp, and then I'm working on another one soon that I hope works out, but it's been very cool.

And are those, like, sponsored videos you're making for your own page?

Yeah. So so far, the, the two that I've done have been branded content for my own page, and they send in the deliverables and the contract, and then within a certain amount of time, I have to send in my scripts and my drafts, and they have to approve the videos and then finally compose it.

Do you have like a dream partnership? Is there any brand you love that would be cool to work with?

Probably. I don't know if the Cincinnati Reds count or like baseball in general, but definitely up there, like that probably doesn't even. They don't do partnerships.

Nike, though, is one that I've always wanted to do. I genuinely think that would fit very well with like disability clothing and stuff like that as well as actually lately have been really nothing to do with disability. But that's fair.

Lately I've been really into baseball cards. So if Topps or any Upper Deck, whatever baseball cards manufacturer is listening, I would love to work with you because my inner child screams every time I rip open a baseball pack. anyway.

so I know like some creators get a lot of harassment online or negative comments. Do you tend to get much of that and is it worse on any particular platform?

It depends. The better a video does, the more harassment I will get, which makes sense. But like, it really is quite the difference. If a video does okay, I get no hate whatsoever. Like my audience, I love the people who watch my videos. I cannot stress this enough.

I don't know what I did to get so lucky, but ever since I started posting, the people who comment consistently are the nicest and funniest people I have seen on the Internet. And a while back I did such a dumb video. I just screamed. I was like, "I only have 20% lung capacity. I'm going to see how loud I can scream." And then I would just scream. And for whatever reason, one of those videos got 14 million views and the amount of hate was like...I didn't even know that many comments could go into a video. It was crazy. My wife was so upset. I was just like, "ignore it." But she was trying to delete comments and literally could not delete them fast enough. She would delete one and then five more would appear.

Why was that so upsetting to people? That's so dumb.

They would just call me different characters from shows that were disabled. I think there was a lot of like little kids.

I try not to treat TikTok comment sections too seriously because I. I know that it's a lot of kids out there and like, if somebody sees my video and they think it's edgy to say some joke, odds are I'm not gonna give it much mic. Sometimes I'll click on their profile and if it's like an adult man. Then I'll go in a little bit. But I always assume it's a kid who doesn't know what they're doing.

That's very gracious of you to assume that.

Honestly, I think it. I think it benefits me more than anybody to have this. You know, nobody. No. No adult would get mad at me. I am. Surely these are people who brains have not developed! It really depends on the video, not the platform for me specifically. And the better a video does, the worse people it gets to.

Yeah, they really come out of the woodwork.

They really do. Which is hard because. Sorry to derail a little bit, but once you see those views, a little voice in the back of your head says, "well, if I know I'm doing it ironically, maybe it's okay. Maybe if it brings me forward in the internet space, maybe I can make a fool of myself a little bit." But luckily, I have people around me and my wife who's like, "absolutely not. You keep doing what you started with because that's what you're best at."

And I've seen other disabled content creators do content that I don't love, and it reminds me every time I see it that I don't want to do anything I'm not proud of.

That's a good way to look at things and stay grounded. That reminds me, I actually. One semester for my social media class, they all have to lead discussions, and one of the topics that I had on my list of ideas was like, the disabled Olympics TikTok account that was, like, really offensive. Yeah, the Paralympics one. And then I referenced your video. I was like, people need to learn about this. Look at Tyler's video to get an understanding what's going on.

Oh, yeah, that was. Wow. Yeah, I totally. You know what? It's been a while since I thought about that. That was a fascinating case. The Paralympics TikTok account at the time, I haven't checked in a while, at the time was pretty much exclusively filled with, I would say, jokes about having a disability. I would say that comfortably. I think that's what it was.

And when I critiqued it, a lot of people came to me and said, if it pushes the Paralympics to more people, like, more people hear about it. And I also heard that the person running the account was disabled. And if these things are true, then it should be okay.

And I think after a lot of thought, I deny that pretty, pretty heavily. I don't think the fact that the. If it's true, the person who ran that account had a disability. I don't believe that gives them a free pass to speak for everybody with a disability. Just that I'm always nervous that my experience will come across as the experience for disabled people.

That was a tough one because I was kind of going against the disabled community in a way, and that was hard for me to grapple with and to bring my point across without misrepresenting myself.

It's one of the things that seems like there's so much nuance to it and everyone's entitled to their own perspective and you gave it a lot of thought, but it's still tough to go against the grain.

It is. And I think for the, you know, again, my comment section was pretty nice. I think, I think everybody was. Even if they disagreed, they saw my point. It also kind of goes back to the screaming videos. Like, sure, maybe, maybe that would bring my profile to more people. Maybe they would see somebody with a disability.

But does that accomplish what I need it to? And that's the question. I, I don't know. I don't, I don't, I don't believe it does.

So those, like rage bait or engagement bait things sometimes just, they can be effective. But is it worth it?

Exactly. And there's a lot of mental gymnastics can play to justify a lot of things.

Right.

But at the end of the day, if I'm not proud of it, I'm not gonna, I'm not going to post it.

Is there any type of content you haven't done that you really wish you could experiment with?

I don't know if I have any specific examples, but I would like to leave the bubble a little bit with disability and just kind of talk about the world and lighter things sometimes.

And I do talk about a lot of things occasionally, but I do feel that because I, I am a disabled content creator, I get very self conscious about making a video that does not have to do with that in some way or another. And I've done that to myself a little bit. It's nobody's fault on my own, but it is.

You know, I love sports and I would love to be able to talk about sports. And I can. I have free will, you know. I know, but I'm just scared. I think that nobody cares about what I actually have to think. They just want to maybe hear what it's like to have a disability, which is fair. I want to explore other topics as well.

No one wants to be pigeonholed into just one facet of their life.

And I always feel very nervous even talking about it. Because I love the way that I've advocated. I never thought advocating was for me ever, not once. I never thought I would be in this position. And to find a way to do that in which I feel comfortable has been such a blessing. I just hope to be able to do other things that bring me joy rather than just advocate.

It would be cool. Like, you could try going live during a game or something and just chat about the game and let people tune in. That would be kind of laid back.

I get so nervous that nobody will care. And then I feel like a teenager who's like, "oh, I don't want to post this. Will people think I'm cringe?" It's a cycle. It's a horrible cycle.

I am cringe. I am free! That's what I try to lean into sometimes. As long as you're having fun with it, I feel like it might be worth trying.

I agree. I do agree. Fundamentally, it's just hard to get there.

I get that. Well, before we wrap up, I just have one more question. I'm curious about where you're interested in going in the future, either with your career or creatively? Like, if you would do a book or a comedy show or anything like that.

Oh, man. I've been told potentially to do comedy before. Like, actual standup comedy. That terrifies me more than anything. So maybe that's in the future. Nothing soon, probably.

But I have thought about writing more the video medium of TikTok. So it's been a while, and I'll keep it up for sure. But part of me wants to be able to just lay in bed and dictate a story or a thought or something. And my sister recently told me about. What's it called? I feel so stupid because I think everybody knows about it. Substack.

Oh, yeah, right.

Is that, like? I don't know if that's like, me being, like, "what's it called? Twitter?" I don't know if that's the same thing, but...

I feel like it has blown up. I could definitely see you having a good Substack people would enjoy.

It doesn't sound right. It's throwing me off.

I know. It does not sound. It doesn't flow. It does not flow. But, yeah, I think that would be where hopefully I can set my sights, too.

Very cool. I would definitely read it.

That really does actually mean a lot. That really does mean a lot. Thank you.

Well, thank you for coming on the show, Tyler. This was really fun. I'm glad we got to talk.

No, honestly, it was a much needed, much needed moment in my day, so thank you very much. It's super, super easy to talk to you. I'm really, really happy I was able to.

This has been a presentation of the Lunchador Podcast Network.

Who wouldn't want to hear Tyler talk about Joey Votto for an entire hour? I know I would!

God, Joey Votto was so good.