Elijah Stacy | Turning Physical Limitations into Mental Strengths

Srini Rao

Elijah, welcome to the Unmistakable Creative. Thanks so much for taking the time to join us.

Elijah Stacy_

Thank you so much for having me today.

Srini Rao

It is my pleasure to have you here. So I found out about you by way of your publicist or somebody who pitched us. And when I read your story, I thought to myself, yeah, this is definitely a story worth telling. But before we get into all of that, I wanted to start by asking you, what is one of the most important things that you've learned from one or both of your parents that have influenced and shaped who you've become and what you ended up doing with your life?

Elijah Stacy_

There's a lot of things I learned from my parents. It's hard to narrow it down to one, but something that's been on my mind a lot lately is my dad was a head football coach, and growing up on the football field as a little kid, I mean, I'm talking four years old following him around on the football field. That had to change me psychologically. That made me super competitive, and I'm incredibly competitive today. I'm in a wheelchair, right?

But I have an athlete's mindset. I mean, everybody says that around me. Coaches say that to me, athletes say that to me. I have a lot of athlete friends as well. So I would say that my dad really instilled that competitive drive in me, but I also think he instilled, you know, having character, having honor, doing the right thing. He was really big on that. And my mom as well pushed me to be ambitious and to believe in myself. I mean, I know a lot of people say that, but I think in my situation, it's really unique because

Being in a wheelchair and having a disease, you know, my mom has never let me use it as an excuse. She's never let me hide behind that, but she's always said, okay, so what, you're in a wheelchair. You know, so what, go get straight A's. Go, go do the best at this. Go give a great speech. You know, push yourself. So that's how my mom raised me, and she's a fighter, and I see it in her actions and how she's taken care of, you know, my little brother Max, who was completely confined to a bed and then passed away.

Srini Rao

Hmm.

Hahaha

Elijah Stacy_

and then my brother Kai as well, and then raising my older brother Will, who he's completely healthy. Just seeing how she's raised us, her actions speak for themselves. So it's really hard to narrow it down to one, but that's what I would say when trying to answer that question.

Srini Rao

Yeah.

Srini Rao

How old were you when you started having to be in a wheelchair? Were you born this way or is this something that happened as you grew up?

Elijah Stacy_

Well, it's kind of an interesting question because I'm born with the disease, but as the disease progresses, then you end up in a wheelchair. So I used to walk when I was a little kid, but I walked on my tippy toes, right? And that's common with people with Duchenne Muscular Dystrophy because your muscles are starting to deteriorate. And so you're still trying to walk. So you're still trying to have that functionality. And so your muscles are gonna compensate to make that happen. So you walk on your tippy toes. And then when I was 11 though, that's when I entered the wheelchair and became completely dependent on the wheelchair full time.

Srini Rao

Hmm.

Srini Rao

Well, the reason I ask that is you mentioned your dad as a football coach and I'd imagine as a coach, like probably one of your dreams as a parent is to be able to coach your son and get to see him on the field, especially if you're a football coach. And it's like a big part of your life. I mean, you know, I always go back to something like Friday night lights and I can't imagine, you know, if coach Taylor didn't have a daughter, but he had a son in a wheelchair, like what the effect that would have on the relationship between him and a son. So I'm curious, like.

Knowing that you were never going to be able to play football, you know, outside of encouraging you to have the athlete's mindset. How did that change the relationship with your dad? Like, what impact did that have on the relationship between the two of you?

Elijah Stacy_

Yeah, yeah, I wrote about this a lot in my book actually. I, when I was a little kid, you know, I loved football. I'm a huge sports guy, still to this day. And I always worried about that because you know, I wanted to play football. I wanted to put the jersey on and go on the field. And I, you know, for a lot of reasons, I wanted to play for my dad and I always worried about that. But something my dad says to me a lot lately, not, not even a lot, actually, I don't want to say that because a lot kind of ruins the specialty of it. He says it.

during big moments like if I give a big speech to a huge company or do something big he'll look at me after and he's like you know I'm more proud of you than if you're like a Heisman winner trophy you know a father of a Heisman trophy winner athlete type of thing and that's really cool to hear because yeah but my dad says it's all about mindset you know we're really into that it's not about it's like the Navy SEALs you know it's not about having

Srini Rao

Hmm.

Srini Rao

This is a group of people that, you know.

Elijah Stacy_

the biggest muscles and being like the guy with the six pack abs and whatever. It's about the mindset. It's about what goes on in your mind because that's what separates the Navy SEALs from everybody else. And I try to have the same thing where, yeah, my body might not work as it should, but my mindset is unstoppable. And that's something that my dad and I both are real big on. And so I don't know how it's really impacted me. I mean, I know how it's impacted.

Srini Rao

I feel like we're at a place where...

Elijah Stacy_

I know that's not impacted me and how I feel about it and how I've changed over the course of the years. I'm not sure how it's impacted him. I think that he would probably have loved to see me play for him and whatever. But I think at the same time, he's very proud. I mean, actually, I know he's proud of me for what I'm doing today with what I've given. And one more thing. He's real big on because this will answer the question. He's real big on he says that.

Srini Rao

Hmm.

Srini Rao

Yeah. Well, yeah, please go ahead.

Elijah Stacy_

The reason he loves to coach is one, he loves the sport, but he said mainly it's because he wants to make young men become, you know, developed, have high character and whatever. So he's like, I accomplished that with you, with how you're going about your disease and everything that you're doing today. And so, yeah.

Srini Rao

Yeah. What you don't one thing you mentioned is mindset multiple times and that you're in a wheelchair and you have a physical limitation, but your mindset is rock solid. And the funny thing is there are people who don't have your physical limitations, but limit themselves mentally. Why do you think that is and how do they overcome it?

Elijah Stacy_

Self-esteem I think that people I think self-esteem is one of the major issues and your self-image I think people they view themselves Improperly and that there's a I mean we can get into this a lot I think this is fascinating psychologically speaking, you know, it could be like how they were raised in different environmental factors But I think that no matter what you could still change that you get to choose how you want to see yourself And there's things you could do to change your self-image

But that really matters. I mean, when I was 11, went into the wheelchair, I started playing basketball at school in a wheelchair. And I didn't believe I could. But my friends encouraged me so much to do so. And then I got good at it, and I started to love the sport. And then I was playing competitively a year later with them. And that really helped me see myself as everybody else. And I started to view myself as everybody else. And my parents and granddad and me, now I'm just like everybody else.

And what I mean is, I mean, I literally believe that. In fact, sometimes I need to humble myself because sometimes I think I'm better than other people in terms of strengths and weaknesses. So, you know, and that's how it's gotta be though because everybody does have their strengths. And you know, like somebody's way better at writing poetry than I am. I suck at poetry. I don't even understand it, right? But I may be better at public speaking than they are. And everybody's just gotta recognize that. But where I'm going with this is,

Srini Rao

Hahahaha

Elijah Stacy_

I think people really view themselves in the wrong light. They have low self-esteem and you can increase your self-esteem and that's one of the greatest factors to everything I'm doing today, to my success, is self-esteem. I write about the self-image in my book. There's a whole lesson. It's one of the 13 lessons and it's really that important because, I mean, if you view yourself as not confident, you're going to act not confidently. But if you view yourself as being confident, you're going to act confident. So...

Yeah, I think people just they don't view themselves correctly. And honestly, I think you got to be a realist, but I also think at the same time, be delusional. I guess this is a new idea I've been kind of flirting with is what's the point of trying to be a realist or whatever? Like that's going to just be a self-actualizing prophecy. Why don't you view yourself as something that you're, I guess, not?

Srini Rao

Yeah.

Srini Rao

Mm-hmm.

Srini Rao

I just, I just want, I don't-

Elijah Stacy_

but you have some truth behind it. You know what I'm saying? Like for example, you want to be more confident, say, okay, I am very confident. And then the truth is, well, I raised my hand in class before, I spoke out to people before, I went up to somebody before. Those are little bits of confidence so that you can ground that delusion, if you will, in reality somewhat. And then eventually as time goes on, the more you do it, the more you're gonna believe that you actually are confident. And I think that's how you gotta be.

Srini Rao

Yeah.

Srini Rao

Mm-hmm.

Srini Rao

Well, I want to come back to that, but I want to ask you about losing siblings because I think any parent probably doesn't imagine that they're going to pass away or their kids are going to pass away before they do. What did you learn about resilience, navigating grief, and how did something that tragic change your family's life?

Elijah Stacy_

Yeah, so my brother Max, he passed away in 2019.

And so when he was born, he had open heart surgery, and it didn't work. Well, it worked, but he had a massive stroke. And it left him cognitively delayed, blind, needing a feeding tube eventually, full-time nurse, all of these major problems, severely disabled. And that itself is already a lot there. Our family had, in a lot of ways, revolved around Max, take care of him.

wait for the nurse to get it at our house at the right time, you know, because the nurse doesn't live here. Before we can go out, you can't just, you know, it's harder to take Max out with us. And, you know, we would go to the hospital many times a year. I mean, it was normal. And it would be like at 2 o'clock in the morning, you know, he would start having a seizure or something, and we'd rush to the hospital and whatever. But the last years, it started to really, he started just becoming worse and worse. And I mean, in the hospital, like...

out one month back in the hospital the next month. All right, it was getting really bad.

Srini Rao

Yeah, I mean, yeah, a couple of minutes.

Elijah Stacy_

And I think it's...

It's really hard to articulate this because to watch your mom and your dad lose one of their kids really taught me. I know my parents loved me, but it really teaches you just how much they actually love their kids and how much a parent actually loves their kids. And just hearing the cries of my mother, I never heard a cry like that before, to see my dad that depressed and sad.

Srini Rao

We have the base installed.

Elijah Stacy_

to see my mom after he passed away. My brother Max, this is something that...

I think really explains the situation well is my brother Max had like this teddy bear type of thing that he would, you know, he would hug when he was in the hospital in his last days. And I remember coming in to my mom's room, she was just laying down. And I remember seeing that same teddy bear in her hand afterwards and she was just holding onto it. Almost in the sense, it felt like she was trying to hold that teddy bear to...

Srini Rao

So, yeah, we either took...

Elijah Stacy_

Hold my brother Max again type of feeling and it's just Well for me, it's really motivating because I want to cure my disease because my disease, you know, it's fatal So I don't want her to lose another kid. I don't want her to lose Kai as well and It's super motivating to me to want to do that. But it definitely changes your view of life It definitely changes your view of relationships. It definitely changes your view of love, right? My parents loved Max unconditionally. I mean what did Max do for them? Nothing. In fact, you probably

Srini Rao

Yeah, I mean, I just, if we get enough that I can...

Elijah Stacy_

made their life harder in a lot of ways, having to take care of him like they did, but they did it because they loved him so deeply.

Srini Rao

Mm-hmm. Yeah. So, you just told me that the disease is fatal. I didn't realize that. So, you're 11 years old. You get put in a wheelchair with a disease that's fatal. How old are you now? Okay, so you've lived nine years longer. What is the typical, you know, sort of lifespan for somebody with this disease?

Elijah Stacy_

I'm Tony.

Elijah Stacy_

Yeah, 25.

Srini Rao

Okay, wow. So did you understand the gravity of that when you were 11 years old, and how is your understanding of what that means changed with age?

Elijah Stacy_

Yeah, no, so I didn't know that when I was 11. I learned that when I was 15, and I'll tell you the story. I was at a fun, well, I'll tell you the whole story, so.

During 9th grade, I was in the IB program. I was doing, you know, the IB program is very advanced. It's like the most advanced program you've been in. So, so in that, I was getting straight A's, I was working really hard.

Srini Rao

Mm-hmm.

Elijah Stacy_

and I wanted to do something great for the world. I started reading a lot of business books. Shout out South Codin, let's read South Codin in ninth grade. And I wanted to do something great then. I thought, you know, why do I have to be 25 or 30 to do something great? Why can't I be great at age 15? Why can't I change the world now? Why can't I do something that will leave a legacy now? I just didn't know what I wanted to do yet. I didn't know what I wanted to do. But anyways, I went to this fundraiser.

for Dushin and I was the type of guy that didn't want to be involved in the community didn't want to talk about Dushin and Be the poster boy and any of that. I didn't want to do that because I didn't view myself as a Disabled person I didn't view myself and I still don't but you know, I wasn't that type of guy So anyways, I go to this fundraiser and we're waiting for it to start. It's a dance team of high school dancers, they're putting on a performance And I'm looking at the booklet they have, you know

Srini Rao

Yeah.

Elijah Stacy_

waiting for the event to start. So I'm looking through it and I get to the last page. And the last page starts talking about the shin. It says that the shin is a muscle wasting disease that eats away a person's muscles as time goes on. I thought, okay, yeah. And it says that the disease leaves patients in a wheelchair. They become fully dependent on the wheelchair. I thought, okay, that's not news to me. I'm sitting here in my wheelchair reading that. But then the booklet, it mentioned that patients will lose mobility in their arms.

And I just remember having a really weird feeling because at the time I had more arm function than I do today. And I'm looking at that and you know, I love throwing the football around with my dad. I love shooting baskets, playing basketball. I mean, I dribbled in my wheelchair, I passed, I shot threes, all kinds of stuff. I love basketball. And I'm thinking, I may not be able to do that one day. That really hit me hard. But then it got worse. Then the booklet mentioned that most patients pass away when they're 25.

Srini Rao

Yeah, I think what would be ideal is that we can...

Elijah Stacy_

And I remember temporarily like not breathing for a second, just blood rushing all over me because I never thought about dying, let alone 10 years later from, you know, when I was reading that booklet. And I thought, oh, this is a mistake. They don't know what they're talking about. This is wrong. And then the booklet made me accept reality because it used logic. It said the reason this is because the heart and the diaphragm, those are muscles. And those are going to be attacked as well. And I thought, yeah, no, that makes sense. If if all the muscles are attacked and those are muscles.

Srini Rao

That's just it.

Elijah Stacy_

then those would have to be attacked as well. And so I read that and I was like, wow, like I wasn't even present anymore. I wasn't even looking at the performance. I was in a different world. And I remember the last thing it said was the disease is incurable. And I thought, oh, well, let's see about that. Because...

I'm the type of guy where somebody tells me you can't do this or you can't do that my whole life by the way my whole life It's always been like this. You can't do this. You can't do that. And I go do exactly that I thought okay Let's see. Let's see. Let's see what I could do. Let Elijah Stacey answer now. Let me into the ring Let's see if it's incurable now. And so I remember going home That night wanted to distract myself. I put on my favorite superhero Ironman and I'm watching and Tony Stark, you know, he uses his knowledge to solve problems

Srini Rao

Yeah, it's a little, sometimes they're a little finicky in the middle.

Elijah Stacy_

I'm thinking why can't I do the same thing? I love business. I have a passion for it Why don't I do something to cure my disease? And so that I started being should I start a for-profit company or sure start a nonprofit and I thought well for-profit I don't really have a product or service right now. You know, I'm only 15. I don't got a lot of Contacts a nonprofit is probably what I could do best considering where I'm at. So I started nonprofit File with the state of California start recruiting board members

following all the legal paperwork and everything and created the social media, created the website, created the logo. I did all this myself and we started a non-profit and the whole goal of the non-profit is to advance gene editing and gene therapy into human practice to complete the cure for Duchenne. And we're going to, we are going to pull that off. And I just, so that's, that's how I, that's how I learned that the disease is fatal. But honestly, the moment I heard it was fatal, I

Let's go do something about it. That's how I am. When I have a problem, let's go solve it. I don't really believe in, I mean, I complain, I'm a human, but I don't like to sit and complain for more than...

Srini Rao

I'm gonna go.

Elijah Stacy_

five minutes or whatever because complaining does nothing. Complaining is not a strategy. You know, it doesn't help you get better. Like if I sit here to you and complain about, my life is so hard, I'm in a wheelchair, my arms don't work, oh, I have a fatal disease, the life's so unfair, I might die and I'm just starting my life. You know, what is that gonna do? It's not gonna change anything. But if I sit here and I tell you, hey, I have a plan to cure my disease, can you help me? And you might say, oh yeah, I would love to help you, Ledger, and I like your plan,

problem. So that's how I think about it and yeah that's a that's a long answer to your question.

Srini Rao

No, no, there's a great answer. I'm so glad you told it that way. What progress has been made to curing it, like medical research wise, etc.

Elijah Stacy_

Yes, yes, I'm so glad you asked that question. So this stuff is fascinating to me. So gene editing, so have you heard of CRISPR? Yes, so CRISPR, that's one of my main focuses is using CRISPR. And we've actually already tested it on mice, dogs, and it's worked. We have cured it in mice and dogs, it's worked. We've done it on human heart cells of patients with Duchenne, and it's worked. The problem right now is

Srini Rao

Yeah, of course.

Elijah Stacy_

having a vector, the delivery vehicle, if you will, to deliver the genetic payload into patients safely and effectively. And that's what gene editing, that's also true with gene therapy. So with gene therapy, that's when you insert the gene into a patient's cells, and it gives the instructions to the patient. So like the way I like to think about this is, take a page, okay, of a book, okay, you got this page.

Let's say the page says, I went to red. I went to red. Well, with gene editing, what we can do is we can change the R in red to a B. And now it says, I went to bed. Now as the reader, I understand what it says. It makes sense. It has functionality now. That sentence makes sense. So that's editing the page. And that's what gene editing allows us to do. We can edit human DNA or any DNA like it's a piece of text on a Word document. Great. With gene therapy, the way I like to think about this is say that you have that page, I went to red.

Well, instead of editing that page, what we can do is we can take a page with the right instructions and just insert it into the book on the next page. So you read, I went to read, it makes no sense. You flip the page and then you read that same sentence again. It says, I went to bed. Now you still have the proper function. It still gets the job done. The message was still communicated properly. That's the two options that we have. Now the problem with gene therapy right now is the strophin is so large. I believe it's the largest gene.

that we know of actually and that's what it encodes for dystrophin and that's the protein that's missing with patients with dystrophin and it's so large that we don't have the vehicle, the vector, to deliver it and so what we need to do, right, what's going to cure all these genetic diseases, not just the shin

is developing better vectors and we're doing that right now and we will cure this disease and other diseases I think within the next, probably under the next 10 years, I truly believe that. I think that we're entering the golden age of medicine and I'm so, so fascinated by gene editing and what it can do because, I mean, the possibilities are nearly endless.

Srini Rao

Mm-hmm.

Srini Rao

It your knowledge of the subject is just mind boggling to me because I'm listening to you. I was a Berkeley undergrad and I'm pretty sure I had friends who were pre-med who don't know detail in the level that you do in terms of science. I mean, my sister's a doctor. I'm curious was med school ever on your radar?

Elijah Stacy_

No, med school is never on my r- I mean, well, okay, I will say this. I... I was thinking about going to college with... Well, I- Yeah, so I was thinking about going to college and I was gonna major in, um... Like biology and everything, but... I just decided to take a different route in life and... Do this, because I think I could be more effective and I know what I wanna do. But yeah, I was kinda curious and I was actually- Fun fact, I was actually really interested in doing law.

And so I was in mock trial and everything and that's how I had that legal help, right? With the, so to start the non-profit, that's how I had the confidence to do it because I understood law a little bit more than the average person.

Srini Rao

Mm-hmm. Well, one other thing I wonder about, the average 15-year-old doesn't say, you know what, I'm gonna change the world before I'm 25, why do I have to wait? I mean, there are people who go to elite colleges who don't think like that. Where does that come from?

Elijah Stacy_

Ha ha.

Elijah Stacy_

Yeah, who knows? Maybe my father and my mother and honestly, I don't know it's weird because I've been realizing that lately that I have goals that are not normal, but it's okay I don't want to be normal and I'm not normal and it's not because I'm in a wheelchair It's because of how I think it's because of what I do. I think that makes me not normal and Yeah, you know, I just don't see the point in life

of just trying to be average like I know and I'm not saying this is wrong necessarily. I just I don't see it for me. You know some people they're okay with just working a job and then coming home and that's their whole life. You know that rat race and for me it's not even about money or anything like that. It's about I want to really make an impact that makes people's lives better. My whole life's mission right. Simon Sinek start with why right. My why.

Srini Rao

Mm-hmm.

Elijah Stacy_

is to minimize human suffering and propel human prosperity so that humanity can have a better quality of life. And if you look at everything I do, it fits under that umbrella. Trying to raise money to advance science to cure this disease, that minimizes human suffering. Writing my book.

that has a lot of motivating and inspirational lessons in it that can help people live a more prosperous life, you know, that helps advance human prosperity. And together, all the work that I'm doing, it makes humanity have a better quality of life. So, I don't know. I don't know where the desire to want to change the world and do crazy, you know, accomplish crazy goals. But, but yeah, I just, that's how I think about it. It's just, to me, it just, if you have one life...

Why, why to settle for average?

Srini Rao

Yeah.

Hmm. Well, speaking of not being normal, what I'm really curious about is how your entire social life starts to change when you find yourself in a wheelchair at 11. Like how does it change your dating life? How does it change your day to day? But let's start with your social life. Like what is, how does it change things?

Elijah Stacy_

Yeah, so...

Elijah Stacy_

Well, so day to day life or social life? Okay, social life, honestly, it's an advantage. It's an advantage for sure. The reason I say that is because you have a choice, but the wheel, like you have a choice on what you're gonna do with it. For me, the wheelchair is super memorable. People are not, you know, when you see somebody in a wheelchair, it's different. Like it's not normal to see somebody in a wheelchair, right? So you stick out. That's an advantage because

Srini Rao

Let's start with the social life.

Elijah Stacy_

you're able to become known around your school more easily or whatever and now all you got to do is just have a good personality and be likable and go out of your way to meet people and do whatever and you're gonna make a lot of friends quick and that's what I did. I was like a popular kid at my school later on in my school life and yeah to me it hasn't hurt me or anything like that and I think it's all a choice you know if you

Srini Rao

Yeah.

Elijah Stacy_

Like I said goes back to that self-image if you've yourself as all people are gonna like me now because I'm in a wheelchair Whatever well no people are not gonna like you now because you're negative, and that's how you think about things you know

Srini Rao

Hahaha

Elijah Stacy_

If you're a real positive and whatever people might be inspired they might go to you with your with their problems and you can help them You know and find common interest don't make it about the wheelchair You know it to me my friends and oh we love sports. Oh, we love basketball You know, we trash talk each other, you know, i'm a clippers fan. They're laker fans or you know warrior fans You know, we'd all trash talk each other or football or you know talk about this or that uh, just be like every everybody else, you know, it's like everybody else and

I was somebody that went on my way to meet new people and like if they were lonely I'd go and sit by them. Like I didn't want people to be lonely. Like if I saw them sitting alone I would go sit by them and keep them company and bring my friends with me. Like I don't, yeah, it's honestly just be a person. To me it makes no difference. Now you might say, well, whatever they go do physical activities, okay they do physical activities. Okay? You know, maybe even if I could walk maybe I wouldn't want to go do those physical activities anyways. And so it doesn't really change anything. It's like I want to...

Srini Rao

Hahaha

Elijah Stacy_

do this, you know, I love books, I love having intellectual philosophical discussions, I love talking sports, I love eating good food, let's go do those things, that's what I can do, that's what I want to do, right? When you want to go do something else, like go on a hike or something, you know, go do that, like whatever, you know? So that's the social part.

Srini Rao

Mm hmm. Yeah. What about dating? I mean, I know you're 19. I'm just curious like what this is like when it comes to dealing with dating and relationships.

Elijah Stacy_

Yeah, so I mean with dating, so I mean I had a girlfriend last year. We dated for nearly a year. So I mean there's that. And you know for me, if you want to talk about me in particular, dating it's, you got to really impress me to be honest because I need somebody that can hold a conversation with me and I don't mean that in a cocky way. It's just a lot of people aren't interested in talking about.

soup like I Expect somebody that is want is willing to come help me change the world with me, right? A lot of people like I said, they're not into they just want to own normal job and go eat a piece of pizza and whatever And to me, you know, I'm not about that. It's like I want to talk about deep things intellectual things, you know I need you to be ambitious yourself and so for me my problem with dating is you know, I just got away until somebody comes along to and

to impress me because you know I'm on my mission right now to literally change the world to save lives to cure this disease to do the things I'm trying to do and so that's what I'm waiting on is just you know waiting till somebody you know if they come along they're like super smart super ambitious you know they take care of themselves everything like that you know maybe I'll maybe I'll pursue it

Srini Rao

Hey, Elijah, hang tight for just a sec. I drank a bunch of coffee. I need to go to the bathroom again. I will have my editor edit this out. Sorry.

Elijah Stacy_

Sure, sure. Sure, no worries.

Srini Rao

All right, sorry about that. Cool. Well, let's talk about your average day. What are the things that most of us take for granted, like just being able to get out of bed and do things like brush our teeth? What are those things like for you on an average day?

Elijah Stacy_

No, you're all good, you're all good.

Elijah Stacy_

Yeah, I mean getting out of bed like you said, you know for me I figured a way out to get on my bed independently, but it's still a Mini challenge every morning. So I wake up already a challenge the way I get out of bed is so I have a hospital bed What that means is like it has you know, it's kind of like those what is it? Tempur-pedic or whatever you can raise the front up you can raise the feet part up whatever What I do is I drive my wheelchair close to the bed So the wheelchair is a tiny bit

higher than the bed. But then what I do is I sit on the feet part of the bed, I take the remote, I raise it up a little bit. So now I'm higher than my wheelchair. And then I slide over, climb into my wheelchair, no problem. Let gravity work for me. So that's getting out of bed. Brushing my teeth, no problem really. It's a little bit more challenging when you have weaker arm muscles, but hey, we still get the job done. Same thing with combing your hair, all that, same thing. Going to the bathroom, like I said, I...

Once again, I've engineered this because I want to be as independent as possible. It's the adapter's mindset that I talk about. I figured out creatively how to fix that. What I've done is we built a raised toilet seat. They have these. It's not typical. It's not common, but you have them. So this toilet seat is just a little bit higher. It's about the same height as my wheelchair. So now I can just slide over. Same thing. Same thing with taking a shower. I built a bench.

We built it inside my bathroom. It's higher than my wheelchair. So I go into I go in the bathroom My wheelchair has a function on it where the chair can raise up So like I could be like sitting down but be taller if that makes sense like an elevator like an elevator And so to get on the bench, I raise my chair up then I'm the same height as the bench Slide over and then to get out of the shower. I raised my chair back down So now the bench is higher than my wheelchair then I slide back into my wheelchair

Srini Rao

Mm-hmm. There.

Elijah Stacy_

So I figured out how to do all that, remain independent. And so that's how I do all those basic functions. But yeah, those are like the day-to-day things. But in terms of work and stuff like that, it just really depends. I do a lot of media stuff right now, writing speeches. I'm about to take a job soon with a biotech company. There's just a lot of things I do. And I like to remain busy. I like to remain ambitious, as I always say.

And yeah, that's that.

Srini Rao

Can you drive? Just out of curiosity.

Elijah Stacy_

I can't well so I mean I can right now but I can drive it's just really expensive to have a car converted. So maybe in the future I'll do that but honestly at this point I'm not super interested in driving you know I'll take a Tesla self-driving car right but what I'm kind of interested in is you know I just want to get to A to B so I'm gonna get a car real soon my own car and

Srini Rao

Mm-hmm.

Srini Rao

Hahaha

Elijah Stacy_

I'll have to be a passenger for now, because I'm not going to get it converted to where I could drive it. And I'll just let my friends drive me. You know, I'll just let somebody else drive me. And get to A to B, because what's the point? You know, what's the... I don't know. I don't...

Srini Rao

Yeah, absolutely. Well, you know, the reason I'm asking is you mentioned sort of adapter's mindset. How much of your day to day do you have to depend on other people?

Elijah Stacy_

Yes.

Elijah Stacy_

Uh, there's a good amount of things that I'm gonna need help with for sure. But, most of the things, like I said, majority of things I do myself.

Srini Rao

Um, let's go, go back to the whole idea of, you know, thinking that, you know, you've got, you know, until you're 25 here, we are almost what five years after you read that and you're 19 now does the possibility that you might not be alive to see this thing get cured ever across your mind still.

Elijah Stacy_

No, I uh, I seriously think that we're gonna cure it really soon and I've already told scientists that I will go into a trough right now. Even if I'm the first person or whatever, I'm willing to lay down my life for this cause. I give this cause my energy, my knowledge, my time, everything I have and I'm willing to give it my body as well. You know if it takes that to...

cure this and save hundreds of thousands of people across the world. I'm willing to do that. And I really do believe, you know, I follow the science closely. I talk to scientists pretty regularly. I believe that we're going to cure this disease soon. So I'm not worried about it. And fortunately for me, I'm in good health concerning my condition. Like my heart and lungs are great right now. And so that's what you've got to worry about.

Srini Rao

Mm-hmm.

Elijah Stacy_

And so I'm pretty good there.

Srini Rao

You seem to be, like I said, in really good spirits, doing well. What does this look like when it gets really bad for people? Because I'm sitting here getting to have a conversation with you and you sound wildly optimistic. Like, if I didn't know your story, I would have never guessed I'm talking to somebody in a wheelchair with some sort of disability.

Elijah Stacy_

Ha ha see that eight, but that's the self-image right there. That's exactly what I'm talking about That's the self-image when you when you see yourself not as Disabled or you see yourself as like everybody else then your actions will be that and then people will see you that way But I just want to point that out, but okay, so to answer your to answer your question It gets really bad it gets really bad. I mean people need breathing machines. They are like, you know

They get very, the biggest, well, it's hard to say which one is more important, but mentally, I mean, it's, people get really hopeless, really depressed and that's a dark place. And I do believe that your mental health is going to impact your physical health. I do believe that very strongly. And so you have to remain optimistic to keep your physical health good and, you know, go outside and be social and do normal things like that. But I think, yeah, it could get really bad with breathing machines and going to the hospital

you know, getting sick is what can put you over the edge, right? And so, it gets a lot more difficult later in life, but everybody's different with this disease. I mean, there's some people that are 40 years old, right, with the disease. But the average lifespan is 25. But, yeah, some people are strong at 30, some people are very weak. It just depends. But we need to cure it ultimately for no matter what.

Srini Rao

Mm-hmm.

Srini Rao

I just mean like...

Srini Rao

Yeah. And typically is it start getting bad right around the same age as it did for you or does it start earlier or later for people?

Elijah Stacy_

I mean, yeah, so it's about the same those first 20 years are really gonna be The same probably them up so but I mean it might vary a little bit like somebody may walk till they're 14 You know, I stopped working at 11, you know, it's not that big of a difference, but a tiny bit of a difference

Srini Rao

Yeah. Well, tell me a bit more about the nonprofit. I mean, you, like I said, have this sort of level of ambition and part of me wonders what lessons from being a football coach, uh, your dad instilled in you outside of mindset, because what I've understood from every athlete that I've ever spoken to, there's a lot that comes into discipline. Like James Clear, who's been a guest here, said that playing baseball in college and playing baseball in high school actually was a foundational aspect of what's enabled him to think the way that he does.

Elijah Stacy_

Mm-hmm.

Elijah Stacy_

Yes, yes. So I would say that discipline for sure and that drive to get better. I mean my dad after football games I'd watch this we would go in and we had already start to watch film that night I mean it'd be one o'clock in the morning. We'd be watching film of the game that we just played fixing all the mistakes ready to go and if we're really ambitious that night we had already be watching film of the next week's opponent trying to strategize and everything.

Watching my dad, yeah, it's not just mindsets, that's a huge one, but it's also just seeing the athletes, the way they train, the way they think about things, the way they are trying to get better every week. That, you know, taught me the basic idea of like, when you work hard with enough time, you will get results. It does make a difference. So I learned that a lot, but in terms of the nonprofit, yeah, it's destroyed the shin.

That's what it's called. And like I said, the whole goal of it is to advance genetic engineering therapy. And so, you know, a lot of the things I'm working on right now is making this disease known. Something that I think needs to happen to raise tons of money is make it known. It needs a face. It doesn't have a face. Why? It doesn't have a face because nobody has that. Like if you look at, it's not because it's rare. It's not because it's rare. If you look at like ALS or you look at...

you know, these other diseases, but ALS in particular, because it's similar in rarity compared to Duchenne. When you look at ALS, it's pretty well known by the general public. Why is that? I believe, yes, you have the ALS ice bucket challenge. Yes, that was huge. That brought tons of words, yes. But I think a lot of it too is you had people with the disease that already had a huge platform, and they're able to use their contacts and use their celebrity to make the disease known. If you look at,

And that's because the disease, the onset of it happens when you're already more established, right? When you're more of an adult. When you look at the shin, well, you basically get diagnosed when you're like six, and your life's already started. You're going to doctors a lot. It's getting harder. Your life's getting harder. And if you pass away by the time you're 25, well, you have no time to develop these contacts or become a big celebrity or anything like that. So there's no platform. There's no attention there. I'm trying to change that.

Elijah Stacy_

I'm trying to be the face of addition. I'm trying to make this disease known. I'm trying to connect with people with big platforms. I'm trying to tell my story. I'm trying to be vulnerable with how hard it actually is. And in the process of doing that, I'm trying to inspire people to become the best versions of themselves. And I think that that's going to lead to the disease being massively known. And when it's massively known, I think massive amount of money will come in and more money is gonna...

leads to faster results in terms of the cure.

Srini Rao

Hmm, well, speaking of the cure, you know, advancements, have there been times when you've regressed with your condition?

Elijah Stacy_

What do you mean by that?

Srini Rao

Well, have there been times when things have gotten, or does it just generally get worse? Like it does, I mean.

Elijah Stacy_

Yeah, yeah, never gets better. Never gets better. Yeah, there's no like remission or anything like that.

Srini Rao

Okay.

Srini Rao

Wow. This has been really, really thought provoking and insightful and mind blowing. So I have two final questions for you. First, what can our listeners do for you?

Elijah Stacy_

Yeah, I mean, I would really love it if they would check out my book, um, a small if it's available on Amazon, you know, Barnes and Noble Target, wherever, right? Um, and there's an audio book version of it now too, which I'm really excited about. We just got that done. I would really love it if they check out my book because it would really help them. Well, I think it would really help them for starters. That's really why I wrote it, but I also think it would help people understand the disease more.

and just help me build a platform. I'm really trying to build a platform, really trying to build a following because I think that it would be mutually beneficial for my cause, but also for the individual to get inspired to be more ambitious, to have these mindsets that I can share with the world that they can use for themselves. So if they would check out my book, A Small If, that would be wonderful. I would really appreciate that.

Srini Rao

Amazing. Well, I have one final question for you, which is how we finish all of our interviews at the end of Mystical Creative. What do you think it is that makes somebody or something unmistakable?

Elijah Stacy_

Wow, that's a good question.

Elijah Stacy_

I mean, I think it's somebody that's different. And I know that's like obviously, right? But what makes somebody different? And I think it's the way they think because not a lot of people think different. And yeah, kind of pulling some Steve Jobs here, but yeah, think different. I think that's what makes people different.

Srini Rao

Amazing. Well, you told us about the book. Where else can people find out more about you, your work, and everything you're up to?

Elijah Stacy_

Yeah, so you can go on, you know, Instagram, Twitter, TikTok, wherever, at Elijah J. Just the letter, Stacey, so Elijah J. Stacey, you can find me on social media. Or you could just find me on my website and all my social media is there. It's ElijahJStacey.com. You can go there and then if you want to check out the nonprofit, you can go to destroydeshinn.org and Deshinn is spelled D-U.

CHENNE, that's D-U-C-H-E-N-N-E. That's destroygistring.org and we also have social media for the nonprofit as well.

Srini Rao

Amazing. And for everybody listening, we will wrap the show with that.