Elijah Stacy is a young man from Riverside in southern California who loves sports, reading, philosophy, studying stocks, and hanging out with his friends. Elijah is also a 20-year-old young man who lives with Duchenne muscular dystrophy, with a mission to minimize human suffering and propel human prosperity fueling his ambition to cure his disease. Elijah has a little brother named Ky, 14-years-old, who also is impacted by Duchenne and another brother Max, who passed away from the disorder.
Being told he only had less than ten years to live, and beating those odds, he has now written his first book on his own story, hoping to empower others. Growing up, Elijah always wanted to do big things, but writing a book had never crossed his mind until recently. People in his close circle suggested the idea which was what fueled his desire to write A Small If – a book to make Duchenne known.
“I realize that Duchenne doesn’t have a face or a person with a big platform. I thought writing a book or telling my story would be a great way to put this huge message into one thing. I wrote about things that might not be the most comfortable things to write about or share with people but I realized I must do this because if you really want to make an impact or difference you have to sacrifice your ego,” says Elijah.
Elijah invisions his book fit for a wide audience range; from the scientific community, to those in the medical field, people going through adversity, athletes, and even students in classrooms. In his book he discusses critical topics such as genetity and gene therapy, but a constant theme intertwined throughout the whole book is using your suffering and not letting it go to waste.
Elijah says, “Use it to empower other people. Everybody is going to suffer at some point in their life. Not everybody, but a lot of people will face what you face. For example, with Duchenne I can talk about Duchenne, and other people face that. But this extends to other people. Take someone with separated parents – you can use that to help other people going through that. Someone who just lost a loved one – how did you cope with it? So definitely use your suffering to empower other people.”
Elijah’s hope is that this book will be a tool to make Duchenne known, but also a tool to transform people’s lives for the better; help them overcome adversity, improve themselves, and to live a more fulfilling life; “I hope they feel that ok I can do things I didn’t think I was capable of doing. I feel hopeful. I feel inspired. I feel like I can overcome the adversity that is in my life now. I feel more grateful for what I have in my life,” he says.
At the age of sixteen, 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.”
“I took a picture of my x-ray and hung it up on my wall and I’d look at it every morning and just visualise it being straight. I was trying to set the tone of getting it in your mind so I could be focused on that throughout the whole day. That’s a small if. The whole idea there is when you have that sliver of hope, when you have that small possibility of doing something, you can do it. You just have to do these things to make it happen.”
In 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 brother Max to Duchenne, and learning that his other brother has the same disease. Elijah explains how to overcome extreme suffering by developing an adapter’s mindset, understanding what it means to control something rather than influencing it, and using other people’s negative energy as the ultimate motivation.
The two lessons Elijah says have been so impactful on his own life and he uses daily are self-image and autonomy of control. Self-image meaning how you see yourself correlates to how you’re going to act and how you act is how other people are going to see you. And, autonomy of control being a focus on what you can control and disregard versus what you cannot.
To those in the Duchenne community, Elijah says: “I think good things are coming. We’re about to take a major step forward. That’s really what I’m trying to do. We’re finally making this disease known.”