How hard would you fight if you only had a sliver of hope? Elijah Stacy suffers from Duchenne Muscular Dystrophy, a fatal muscle-wasting disease. At the age of 16, to avoid agonizing surgery, he had to endure enough physical therapy to change the shape of his own spine. It had never been done before but still, his doctor gave him a small ‘if’. In his new book, A Small If. Elijah shares 13 lessons he’s learned throughout his life’s journey of losing his ability to walk, getting bullied in school, losing his dear brother Max to Duchenne, and then learning that his other brother has the same disease.

He explains how to overcome extreme suffering by developing an adaptor’s mindset, understanding what it means to control something rather than influencing it, and using other people’s negative energy as the ultimate motivation. Today, Elijah’s mission to minimize human suffering and propel human prosperity is fueling his ambition to cure his disease. He’s been told he has less than 10 years to live but he’s faced long odds before and sometimes, all you need is a small if.

Hey Listeners, my name is Drew Appelbaum and I’m excited to be here today with Elijah Stacy, author of A Small If: The Inspiring Story of a 17-Year-Old with a Fatal Disease-and a Mission to Cure It. Elijah, thank you for joining, welcome to The Author Hour Podcast.

Elijah Stacy: Yeah, thank you for having me, it’s great to be here and I can’t wait to dive in and tell you about my story.

Drew Appelbaum: Elijah, you are the youngest guest that I’ve ever had on the show so congrats on that. Normally, we dig into people’s professional backgrounds but I love to hear just a brief background on yourself. Tell us, who is Elijah?

Elijah Stacy: Well, I’m 20 years old and the book that we’re going to talk about today, my story, I started writing it when I was 16 and finished it when I was 17. I’m someone that loves sports, I’m someone that loves to read, I love to engage in intellectual conversation and be challenged intellectually, I love to hang out with my friends, my family, my girlfriend. I love to eat good food. I’m a well-rounded person who likes to do a lot of different things and has a lot of different curiosities.

Drew Appelbaum: Now, again, normally, I’ll ask this next question and it’s because people had the thought of writing the book in their mind for five years, 10 years, 15 years before they were able to write it. For you, when did you know you wanted to share the stories in the book and put your 20 years— or, you wrote it when you were 17— put your 17 years down on paper?

Elijah Stacy: A lot of people were just telling me, “You need to write a book. You have a lot to say, you have a story. You need to write a book.” I listened to those people and decided, you know, let’s just write a book. As I was writing it, it started to morph into something that I didn’t even think it would be when I first wrote it. What I mean by that is, I included those life lessons at the end of each chapter and I realized that my experiences of dealing with adversity and stuff like that could help other people. I’m really excited about that and so, I just came about and I decided, let’s write this book and let’s see because I want to bring awareness to my disease— make that disease a mainstream known disease. That was my main motivation for writing it. 

I also want to use this book to help people overcome the suffering that, that they face in their life or that they’re going to face because I believe that suffering is inevitable. We all go through seasons of suffering and challenges and tribulations and all of that.

Drew Appelbaum: Now, when a lot of others start their book, you’ll have an idea of, “Okay, this is what I want to write” and you even said yourself, the book changed a little bit. But a lot of times, authors will come to some major breakthroughs and learnings during the writing process.

This is super interesting because the book is about you and your life. Just by taking that pause and by putting pen to paper, did you have any major breakthroughs or learnings along your writing journey about your life?

Elijah Stacy: That’s actually really true. I did learn a lot about my life when I started to write it on paper and starting to reflect back. I’ve learned that I’ve always been someone that is really ambitious… Someone that was always doubted a lot, you know? 

A small if. The title is pretty interesting, right? The title comes from my doctor telling me that my spine was curved out, basically a form of scoliosis with my disease. He said that “I never seen anybody be able to correct, you’re going to have to get this metal rod inserted in your back to correct it” and I really didn’t want it. I went back and forth with my doctors, a very long conversation, and eventually, I said, “If I was able to reverse the state of my spine, could I avoid having to get the surgery?” He told me, “I don’t want to give you any false hope as your doctor, I really got to put my foot down and encourage you to get this surgery. But knowing you, I’ll give you a small if. That’s, if you are able to do it, you don’t have to get surgery” 

About four months later, I didn’t have to get the surgery. My spine was straighter. I bring that up because what I realized is as I reflect on other parts of my life, it’s always been that same type of thing where there’s a small chance for me to be able to do something and then I go and do it. It gives me great motivation and I see that over and over again. Basically, throughout my whole life. I definitely didn’t realize that until I started to write this book. 

I came across other revelations as well, when it comes to Duchenne. I started really think about it and explain things in the book. That was a breakthrough once I started writing. What I mean by that is, I talked about how a lot of people— if you look at Duchenne, the answer to the disease happens when you’re about five years old and it’s just filled with a bunch of adversity and challenges and then the average lifespan is 25.

Most people pass away when they’re 25. There’s no time for these people with the disease to grow a large platform or become a big celebrity or anything like that, whereas I looked at other people like Magic Johnson or Michael J. Fox or Luke Erickson. All these people inspired me and they had a massive platform before their diagnosis and then they were able to use their massive platform to bring awareness and impact to their diseases after their diagnosis with the disease.

I realized that I wrote it on paper and I used that point all the time now and it really helps explain this disease and the situation and what I’m trying to – the problem I’m trying to solve with this book and my story and one of my major missions.

Facing Duchenne Muscular Dystrophy

Drew Appelbaum: Can you maybe tell us a bit more about what Duchenne Muscular Dystrophy is? What does it do? You did say that it’s pretty fatal around the age of 25 but can you just set the framework for anyone who hasn’t heard of that before or doesn’t know that much about it?

Elijah Stacy: Yeah. Duchenne Muscular Dystrophy is a muscle-wasting disease. Basically, what happens is a person will lose their ability to walk when they’re about 11, that’s when I lost my ability to walk. Before that, they’ll walk on their toes, it’s a common side. They’ll be more fatigued, they won’t be able to walk as fast, maybe have a hard time going up steps, stairs, stuff like that. But when they’re 11, they’ll lose their ability to walk. Then as time progresses, they’ll lose mobility in their arms so they won’t be able to raise their arms above their head and that really sucks and it happens during your teenage years. 

It’s a very terrible thing and that’s because it’s a muscle-wasting disease. Losing muscle function in their arms and then your heart— it’s a muscle— as well as your diaphragm that’s responsible for you, being able to breathe, it helps your lungs inhale and exhale. Those muscles get weaker as well and that’s why it’s so fatal, that’s why most people pass away. 

That is what Duchenne does, it eats away a person’s muscles. And the reason that is— going more into it— inside your muscle cells are myocyte cells. You have this protein called dystrophin and dystrophin. The way I like to break it down for simplicity is its kind of like a pillar that upholds a roof, okay? Without that pillar, that roof will cave in on itself. What happens is chemicals that are in your body naturally will come in at unnatural rates and they will tell the cell to basically destruct and it kills the myocyte so you’ll lose your muscles. That’s what’s happening there. That’s kind of the science of Duchenne.

Drew Appelbaum: Yeah, I definitely want to talk more about that in a bit but I want to ask you, going back to that early age— you said, at 11, you lost the ability to walk— when did you find out you had this? When did you get that diagnosis? As a young child, what goes through your head when you hear that for the first time?

Elijah Stacy: I was six years old when I heard it. My parents— it’s kind of funny, my parents told me, “Hey, we have this gift for you.” It’s like a flip phone, I think. They said, “Hey, you can have this but we got to tell you something” they sat me down on a couch and they told me, “you have this disease.” I didn’t really think too much about it. To me, it was more of an answer. I couldn’t explain, because people would always ask me, “Why do you walk on your toes, what’s wrong with you?” I didn’t know myself, I was like, “What is wrong with me?” When they told me, “yeah, you have Duchenne muscular dystrophy.” Okay, here’s the answer then, you know? Finally, I’ve got an answer to tell people.

I didn’t really think too much about it. I started to come more to the understanding of what this meant as I got older. But when I was six and heard it for the first time, it honestly was just like a relief that okay, I finally have a name, an explanation now for people when they ask me, “Why do you walk on your toes, why do you fall so much? What’s up with you, what’s wrong with you?”

Drew Appelbaum: As one can imagine, childhood was pretty tough for you from that point on. You did have several ways of coping. Can you talk about some of the ways that you cope with this throughout your childhood?

Elijah Stacy: I think as I got older, one of the major things that I talk about is the self-image and I just decided to never view myself as being disabled, right? I’m aware that I’m disabled, I won’t deny the reality that I’m disabled. I’m in a wheelchair, this is very clear and I totally accept it. Accepting it is a big part of this but my identity is not in the wheelchair, right? My identity is in other things. Like I said, I’m a sports fan, I love football, I love basketball— go Clippers. That’s what my identity is in, it’s in those things, you know? By doing that, it helps you see yourself that way and so you don’t focus so much on the disease. You just are like everybody else.

I think a really good way to explain this is what happened when I was at a restaurant one time. I was talking to my waiter, we were talking basketball the whole night. At the end of dinner, he said “Hey, I just have to ask you. Why are you in a wheelchair? Because it seems to me, as if we ran out of chairs and the wheelchair was there and you just happened to take a seat in it, you’re just using the wheelchair as a normal chair to eat dinner.” 

I thought that’s a beautiful way, a brilliant way, to explain me and my situation. I’m just having to use this wheelchair to get around, right? That’s it, it’s not some identity. There’s nothing more to it, it’s just something I use to get around. I see myself like everybody else and I have all these curiosities and you know, I’m trying to be great. I want to accomplish greatness. I want to do great things with the world, I want to impact people, I want to serve other people. I might have it harder being in a wheelchair— and I kind of see this throughout my whole childhood— but honestly, that just makes this so much sweeter when I do win, when I do accomplish great things because it’s like I had it harder and I still got through it. I still won. I still did great things. I think the key is— one of the major coping things is— don’t view yourself as being disabled. Don’t focus on what you can’t do, focus on what you can do. 

That kind of plays into the second big lesson too, which is the economy of control, which you know comes from the ancient stoics starts. Basically, you focus on what you can control and you disregard what you cannot control. A lot of things, the majority of things, you cannot control. And when you really realize that and accept it, you stop worrying about all of these other things and you just put your time and energy and focus on the things that you can control. 

Those things I learned early on and those things have really helped me overcome the challenges of having Duchenne and being in a wheelchair. 

The ‘Small If’ Mentality

Drew Appelbaum: Yeah, I mean speaking of determination and focus, I want to bring it back to the title of the book itself, A Small If, which is again what your doctor told you that there is a small if that you won’t be need this metal rod in your back and from that moment you were determined for that not to happen. One, can you just tell us that story of from when he told you that to your next visit? And were there any resources at the time or you could really figure out exactly what to do to prevent having that surgery or to heal your spine back to where it was several months earlier? 

Elijah Stacy: Yeah, so I was not too aware if there were resources or not. I mean, what I was told by my doctor was he’s never heard of anybody doing this, it is basically impossible. It was kind of a helpless situation but he gave me that sliver of hope, right? He gave me that sliver of hope saying “I’ll give you a small if.” But let’s go back to the whole story. I go to this appointment, my last few appointments hadn’t been too good.

The spine started to curve more and more but it was not at the point where I needed surgery but this one got off the X-ray, I looked at them and I thought, “Well, that looks pretty bad.” The doctor comes in and it was a very long appointment compared to the other ones— and he is talking to us, telling us the news. He was saying, “Hey, I don’t want you to be all slouched over when you are giving the speech for your organization in a few years. I think we got to do it now if we’re going to do it. You really need to do it and I really got to start advocating for you to do it.” 

My mom is starting to cry, my doctor hands her a tissue. My dad’s got his head down and that’s what he does when he’s sad. And I am just looking and I am smiling, you know? I probably look crazy but I am smiling because I am like I’m not getting the surgery. I am not accepting this. I am not accepting it, I am going to figure out everything I can do to possibly not have to get surgery. So, I am debating my doctor, going back and forth and every time he just denying me. Then finally he said, “Like I said I can’t give you false hope but I will give you a small if because I know you. I will give you a small if.” 

From that day forward, I decided I am going to go to physical therapy. I went to physical therapy, did intense physical therapy. I taught myself how to cook being in a wheelchair because I want to eat healthier, so I had to learn that and my mom helped me and she taught me how. It was pretty interesting. I’d be driving with one hand carrying the knife with the other hand, it is kind of dangerous but I did it and got it done. I would do visualizations. I hung my x-rays up on my wall so every morning when I wake up I look at it. I’d look at my crooked spine and I would say, “Okay, I am going to make that straight.” I visualized what it would be like to do it, do pull this off, to do what my doctor didn’t think was possible, what he thought was going to be too hard to overcome. And I’d think what it would be like to celebrate. 

There’s this place at the beach in Newport, The Shake Shack, I really like going there. It’s right next to where my doctor is and I’d said, “We’re going to go there and celebrate after I pull this off and it’s going to be so fun.” I swore off eating sweets for the time in between the next appointment. I was like, “It is going to be all worth it, it’s going to be rewarding.” I was just determined. 

I worked out every single day at my house. When I was in physical therapy I’d do it there and then I’d go home and do more workouts. It was just a big effort and it was full of determination because it was like, “I am going to pull this off. I’m going to pull this off.” Especially because my doctor didn’t think I could do it, that kind of gave me even more motivation to do it. I call that lesson in my book rocket fuel. It is when someone gives you negative energy towards you or they doubt you and you believe you can do it, you’re going to prove to yourself that you can do it. You are going to prove to them that, “No, I can do this and you are not going to tell me, you are not going to project onto me what I can and cannot do.”

I was just fired up to do it and then I went to the doctor for the next appointment, went in there—and I was already convinced— and my x-ray was done. I mean, I got off the x-ray table— people in there probably thought I was a mad man because I got off the x-ray table I was fired up like it was a sports or something! Like I am competing against someone even though I am competing against myself. I am going in there— and I even still have the video today. I’m 16 and I have it on my phone. I haven’t showed anybody this, maybe I will release it soon. I have the video and— I am looking at the x-ray and I am going, “That’s straighter! That is definitely straighter!” and I am fired up, kind of raising my voice. I’m like, “That’s straighter!” but I ain’t celebrating yet. 

I am not celebrating, my doctor comes in. He is measuring it, he is looking at it and he is doing a round without a word. It was dead silence in there and I’m smiling, shaking my head up and down like, “Yep, I did it. I did it!” And he’s like, “Yeah, your spine looks straighter. You did it, you pulled it off.” I go, “Yes sir, I did!” I was fired up and you know what? Guess what? At the end of the day, we went to the Shake Shack in Newport and I celebrated just how I visualized with the Oreo shake in my hands. 

It was just great and that right there gave me the spark to say, you know what? I can write a book. This could be the starting point of it. That is just one of the chapters of the book but that really lays the tone of the book, that really lays the message I am trying to convey and stuff like that. 

Destroy Duchenne: The Mission

Drew Appelbaum: There are some incredible stories in there from your life but right now it seems like you’ve really have a new mission and that’s to really do something to combat, to educate, and to potentially cure Duchenne Muscular Dystrophy. Can you talk about some of the ways you are trying to do that? 

Elijah Stacy: Yeah. When I was 15 years old, I started a non-profit called Destroy Duchenne and the whole mission of Destroy Duchenne is to raise money to advance science forward. So, we’re really focused on things like gene editing and gene therapy. We want to advance that so that we can get into human practice and save people with Duchenne from passing away from this terrible disease and to make their quality of life better. 

I’m really passionate about that and one of the major ways that, I think, we will be able to raise more money for this disease is if more people know about it, right? How do you even expect people to solve a problem if they don’t even know the problem exists? We first have got to get people to know the problem exists. But I think what is more important than just getting people to know that the problem exists is that they’ve got to care about the problem? 

It is one thing if they read, “Okay, Duchenne Muscular Dystrophy” and they read the statistics and yeah, it is terrible from the description, but they need a face behind it. They need a spokesperson behind it. They need that person that they have an emotional attachment to that they’re like, “Okay, I can get behind this person. I understand the disease now. I see the hardships and I like this person, I want to help them and I want to help thousands of other people across the world with this, so I want to help this cause.” 

That’s what Destroy Duchenne is about and that’s what I am trying to do. I am trying to bring awareness to this disease so that we can raise tons of money and then take that money, put it into the scientific community and advance this technology which is going to help people with Duchenne. And I am also super happy about this. This is going to help people with all types of genetic diseases because gene editing applies to more than just Duchenne. 

Drew Appelbaum: What is the impact besides educating them on the cause and potentially having them take up the cause for readers of the book? Are there steps that you hope they’ll take within their own lives, just maybe by reading the lessons that you have in the end of the chapter or just by being inspired by your story? 

Elijah Stacy: So my book— I tell people this all the time— it’s a tool right? It is a tool to make Duchenne known, make Duchenne cared about, and help there. It is also a tool to transform people’s lives. There is so many lessons and I hope people improve their self-image or help people learn what they can and cannot control and focus on what they can control. To lower their anxiety, lower their depression. 

I hope people use this book to overcome the adversity that they are facing in their life right now or that they are going to face because I truly believe that suffering is inevitable. People are going to be faced with that and I really think that this book really highlights, really emphasizes, how to overcome suffering. I write it really openly, really transparently. I’m really vulnerable in the book because I believe that you have to be vulnerable about your suffering to help other people overcome their suffering. That’s what I did and I used all my tools and mental techniques and mindsets to show people how to overcome adversity in their lives. 

I really hope that people use this book to transform their lives for the better and become just tougher, more resilient, and just dominate life. To become more ambitious, stuff like that. To be inspired to chase greatness and do great things, to not think that you can’t do something because someone tells you.

I hope that someone that is reading this book, when they read it and someone tells them “You can’t do this or that,” I hope they have “a small if” type of mentality. That they use it as rocket fuel and they go and overcome that person’s challenge or projection on them. 

Drew Appelbaum: Well, Elijah, we just touched on the surface of the book here— there are some absolutely incredible stories in it including the time you met Jeff Bezos, a really touching story about your brother, and then interesting potential future cures from CRISPR, the DNA, and gene editing therapy. I know we just touched on the surface but I just want to say that writing a book where you really educate, you raise awareness and as you just mentioned, you’re incredibly vulnerable along the way is no small feat to put a book like this out there. So congratulations on having your book published. 

Elijah Stacy: Thank you. Thank you so much. 

Drew Appelbaum: This has been a pleasure and I’m excited for people to check out the book. Everyone, the book is called, A Small If, and you could find it on Amazon. Elijah, besides checking out the book, where else can people connect with you? 

Elijah Stacy: People can follow me on social media, at Elijah J. Stacy. They can follow me on Instagram, Twitter. They can also connect with me by going to my website, elijahjstacy.com. They can connect with me there and ask me questions, things like that. 

Drew Appelbaum: Well, Elijah, thank you so much for giving us some of your time today and I wish you nothing but the best of luck with your new book. 

Elijah Stacy: Thank you so much.