A Small If: The Inspiring Story of a 17-Year-Old with a Fatal Disease—and a Mission to

By Elijah J. Stacy

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 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."

In A Small If, Elijah shares thirteen 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.

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 ten years to live, but he's faced long odds before.

Sometimes, all you need is A Small If.

• Language: English
• Publisher: BookBaby
• Release date: Sep 26, 2021
• ISBN: 9781544522272

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A Small If

The Inspiring Story of a 17-Year-Old with a Fatal Disease—And a Mission to Cure It

Elijah J. Stacy

copyright © 2021 elijah j. stacy

All rights reserved.

a small if

The Inspiring Story of a 17-Year-Old with a Fatal Disease—And a Mission to Cure It

isbn

978-1-5445-2228-9 Paperback

isbn

978-1-5445-2227-2 Ebook

isbn

978-1-5445-2405-4 Audiobook

To my brothers: Wil, Max, and Kai.

Contents

1. A Small If

2. Where the Competitor Was Born

3. Max

4. Life-Changing News

5. Childhood Challenges

6. Adaptation

7. The Competitor Comes to Life

8. The Cynic

9. New People, New Judgment

10. Gratitude Is Blissful

11. Paving the Way

12. Suiting Up

13. Hot and Cold

14. The Fight of My Life

Strength in Numbers

Social Media

Acknowledgments

About the Author

Notes

1

A Small If

My doctor just informed me that I need to have back surgery. Not just any back surgery, but a surgery involving a metal rod being inserted in my back to straighten my curved spine. I feared this day might come because my last few doctor appointments showed that my spine was still curving due to my having Duchenne muscular dystrophy. My doctor warned me and my family that this type of spinal surgery was common for patients with Duchenne, and if my spine kept curving, I might have to have it, but I always feared hearing the doctor say it. Also, if I didn’t have the surgery, my spine would keep curving and could crush my organs, which was even more worrisome.

On the day my worst fear was realized I had just had X-rays and was heading toward my room. I was anxious as I anticipated the results. My doctor was taking longer than normal to come in and talk to us, which made me even more fearful of what the results might be. I was nervous about the results because I didn’t want a metal rod permanently inserted in my back. I was worried something could go wrong. I was only sixteen years old.

Finally, my doctor, Dr. Lalonde, came in to evaluate the X-rays. He compared today’s X-rays with the ones from my last visit. Even I could tell from looking at them that there was a minor difference in my spine. The curve had gotten worse.

Finally, he explained, Your spine is curved more than the last time. This is where I put my foot down and advocate for the surgery. I was hoping it wouldn’t curve anymore because you’re almost at the age where you stop growing and the curve would stay as it is, but it’s curving too much, too fast. It’s getting dangerous.

The reality of it all hit me like a freight train. It was easy to think that Duchenne only takes away your ability to walk, but it goes deeper than that, and I was now fully seeing it. This was the first time in my life I thought I might actually die. I looked to my side and I saw my mom with tissues in her hand, crying. I saw my dad with his head down, which is what he did when he was really hurting. Once I saw my parents and the way they looked, I started smiling. Yes, smiling. I asked the doctor, Do I have to have the surgery?

Yes, considering how much your spine is curving right now.

Could I possibly wait a little longer? I asked.

Elijah, we’ve put this off for as long as we can, he said, but this is where I have to draw the line. You need the surgery now.

All hope started to leave me, and my future was looking grim. I was in such denial and couldn’t accept having a metal rod inserted in my back.

I said, So there is nothing I can do to avoid getting the surgery?

He said, I’m sorry; as a doctor this is where I have to start pushing for you to get the surgery. I don’t want to see you in a few years when you’re on a stage giving a big speech for your organization and you’re all slumped over.

I said in search of positivity, Well, I haven’t been working out as much as I have in the past, and I feel like I can reverse this if I start working out again.

He said, I have never seen this type of thing reverse in all my years of practice. I haven’t heard of anybody ever reversing it.

The doctor and my parents started talking about the surgery and who the team of doctors would be. Reality was setting in at this point. I just listened, completely still, paralyzed by the news.

The doctor said, Lots of patients have this surgery during the summer, and it is pretty safe. I would prefer to wait to do it then because it’s flu season now.

My mom, still in tears, looked at the doctor and with sadness in her voice said, This is really hard; this is really hard.

That struck me, and it hurt to see my mom in so much pain. I could tell the reality of this disease was starting to become real to my parents, too. I asked again, Sir, is there anything I can do to avoid this surgery? What if I somehow reversed the curve in my spine, could I avoid getting the surgery?

He said with a serious but doubtful tone, Elijah, I don’t want to give you any false hope, so I am going to have to continue to push for the surgery. I do know the type of person you are, so I’ll say that if you were to reverse the state that your back is in right now, then you wouldn’t have to have the surgery. However, that’s A Small If. I’ll give you A Small If.

That’s all I needed to hear. There was a chance. I could do something about this. I now had hope inside me and I was ready to do the impossible. I was ready to make history.

The doctor and my family started to talk about physical therapy, and the doctor said he would write me a referral so I could get to work. The room was still full of sadness and doubt, but I smiled at the fact that I had a chance to do something to fix it. I was still nervous and scared by the news but also excited to see what I could do.

The doctor’s appointment seemed to last forever. We went back and forth and talked about the specifics of the surgery and then the doctor left the room to get some paperwork. He said he’d be right back to show me something that would make me laugh. He brought back his phone and showed me some memes and funny photos. I thought it was cool that he did that. It showed that he really cared about me and he liked to see me happy.

As we were leaving the doctor’s office, he said he would like to see me in three months. I normally saw him twice a year, so I knew there was some urgency. We booked my next appointment and, as a family, boarded the elevator and rode down in silence, disbelief making us quiet. It was one of the most paralyzing feelings I have ever experienced. On top of seeing my parents so hurt, it really struck a nerve in me.

When we got in our car, we decided to forget all that happened and enjoy the rest of the day. We were all very hungry from a long, emotionally draining doctor’s appointment, so we decided to eat. My family never can decide where to eat, but that day, they let me choose. I chose the Cheesecake Factory, and off we went.

As we sat down at our table, we decided to talk about other things besides medical concerns. When the food came, we all dove in. It was good and helped us regain our energy. It was nice to sit down and have a meal with my loved ones after getting such heartbreaking news. This dinner highlighted the importance and value of family—they’re always there for you, even when you’re at your lowest of lows. After dinner, we headed home. That day was the start of a new mindset—a mindset that could unlock my greatest human potential.

When my doctor gave me A Small If, he was giving me a chance to change the curve in my spine. By giving me hope, even slight, I knew I had to take the chance. I love it when others doubt me or don’t expect me to be able to pull something off. I love it when the odds are stacked against me. That is how greatness starts—by accomplishing things no one thinks you can accomplish.

I soon saw that having the surgery hanging over my head was an opportunity. I started to view my curved spine as a chance to prove to people that change is possible—if you work hard and set your mind on achieving a goal.

I was planning on not only avoiding the insertion of a metal rod in my back, but also reversing the curve in my spine. I was planning on doing what my doctor had said he’d never seen or heard of in all his years of practice. I was planning on achieving greatness.

This fired me up. I was pumped up and ready to give myself over to making my goal become a reality. I was willing to go to the most extreme lengths to make it happen. When you have a burning desire for something, you can make it happen. You just have to want it badly enough, so much so that you’re willing to sacrifice in order to get it.

Some people talk about how they want something badly, but they aren’t willing to sacrifice pleasures in order to get it. They don’t want it badly enough. They don’t truly have a burning desire. When you have a burning desire, you’re obsessed with what you’re after. You can’t stop thinking about it. You may even lose sleep because you’re so fired up to go get it.

The dread of having a metal rod in my back created a burning desire to do whatever I could to avoid it. I had a burning desire to do something unheard of. I wanted to pull this off and I wanted it badly!

I started developing a plan and a mindset. I wanted to lose weight because I knew that would alleviate some pressure on my spine. In order to make that happen, I had to watch what I ate and make healthier choices, plus do intensive workouts. I would go to physical therapy and not complain but do exactly what they said to do, even if it hurt.

I knew there were going to be days when I wouldn’t feel like working out or eating healthily, so I printed a picture of the X-ray of my messed-up back and hung it on my bedroom wall. I looked at that X-ray every single day as I left my room. It was a reminder to stay focused, never give up, and make greatness happen. It was motivating to see my spine every day because it gave me the passion and energy I needed to eat healthily and work out.

I also knew I wanted to do this for my parents. The image of my mom crying and wiping her tears away with a tissue in the doctor’s office after receiving the bad news about my spine was ingrained in my mind. I wanted to pull this off because I didn’t want to see my parents hurt anymore. I didn’t want this disease to hurt them any more than it already had, so I was determined to avoid having the surgery. Having the surgery was unacceptable to me. This mindset really drove me and pushed me to lengths I didn’t even know I was capable of.

My parents and others were pleased with my intense determination to reverse the state of my back. People love it when others are doing big things and are determined to make positive change happen. My positivity is what drove me to go forward with this plan.

The other essential element was for me to act with complete confidence. I didn’t even entertain the notion of getting the surgery. I wasn’t saying what if. I was saying my doctor gave me A Small If. I believe if you doubt yourself constantly, you’re not able to focus on what you want because you’ll always be debating with yourself as to why it won’t happen.

Every single day I imagined myself in the doctor’s office looking at new X-rays showing that my back was straighter and everyone in the room celebrating that I escaped having to get the surgery. I imagined the look of happiness and admiration on everyone’s faces. I imagined the excited way my parents and the doctor would ask about how I did it, how I made it happen. I visualized the feeling of being in the doctor’s office and looking at the X-rays and being proud of my hard work and fired-up for pulling off greatness. I knew that imagining all of these things was important to keep that burning desire alive inside me.

The most important thing I learned from this experience is that you only need a chance to make something happen. If you have any possible chance, then things can happen. It’s when you close the doors on yourself that you limit yourself. When you tell yourself there is no chance and there’s nothing you can do, then that is exactly what you are left with—nothing. However, I wasn’t going to limit myself. I searched for anything positive, and I found that chance when my doctor gave me A Small If.

A week after receiving the devastating news from the doctors, I started working out and eating healthier. However, I was ready to up my game even more. I swore that I would give my all to try to reverse the curve in my back, so my mom and I went grocery shopping so I could learn how to cook healthy meals for myself.

This was all new to me and was definitely going to be more challenging since I was physically disabled and in a wheelchair. But I wouldn’t let that stop me. The wheelchair has never stopped me from doing things, and I wouldn’t let it stop me from cooking. I had tunnel vision and was obsessed with fixing my back, so I knew I’d find a way to make cooking happen.

My mom helped me plan several small meals I could eat throughout the week. First up was chicken. Mom first told me to wash my hands before I started cooking, so that’s exactly what I did. I listened to my mom! Then I got the chicken and took it to the sink to rinse it off. The raw chicken felt weird and nasty in my hands, not at all what I expected. I carried it back from the sink, which was challenging because I didn’t want to touch the controller of my wheelchair and get it all nasty. So I used my elbow to direct the controller in the right direction in the kitchen.

Next, Mom handed me a sharp knife and told me a hundred times to be careful. I undid my wheelchair buckle and scooted up from my seat toward the island bar, where I placed the chicken on the cutting board. I leaned up toward the island bar, picked up the knife, and started cutting up the chicken. It was a lot tougher than I anticipated—a lot grosser, too. I cut long, straight chunks, sawed off the fat, and put it to the side. This chopping process took a lot more energy out of me than I thought it would.

After I chopped up the chicken and removed the fat, I started cutting the asparagus and broccoli. Once I finished with those, the fun began! I quickly washed my hands and moved over to the cabinets near the stove.

I took out a pan from under the stove and carried it over to the island bar. I used one hand to carry the pan and the other hand to steer my wheelchair around the kitchen. I got some olive oil and gently put a small amount in the pan, just like my mom told me to do. I then transferred the chicken from the cutting board to the pan and carried it back over. I put the pan on the stove. I had to be extra careful carrying the pan to the stove because it was full of chicken, making it weigh more, so I used both hands to carry it. I used my elbow again to steer my wheelchair. This had to be some type of talent.

Now we could get cooking. I put my wheelchair as close as I could to the stove and scooted forward once more. This was kind of an awkward and somewhat painful position to cook in; however, I was determined to do it anyway. I turned the flame to medium and got a small spatula out to swirl the chicken around and make sure every part was cooked correctly. I watched closely and kept swirling. I had never cooked before, so I was extra careful. I was nervous that I might mess up.

Once I got the hang of it, I went over and grabbed the chopped asparagus and broccoli. Then I went back to the stove and sprinkled them in the pan slowly, letting them cook with the chicken. I loved the smell of the sweet juices. It created a wonderful aroma that let me know my hard work was going to pay off. I swirled all the ingredients together and then added a dash of salt for flavor. In my mind, I was creating a masterpiece. I cooked the chicken for about fifteen more minutes and then I turned off the stove and let the meat cool.

I bought this easy-to-make brown rice that only needed me to add a little water and then could be heated in the microwave. I had two bags of this, and it made plenty of brown rice for the chicken bowls I was making. Once the rice was done, I got out the plastic containers we bought at the grocery store and started filling them with the brown rice, chicken, and steamed asparagus and broccoli. The meals looked wonderful, and I was excited that my hard work had paid off. I hoped it was going to taste as good as it looked.

When I was done making my dinners, I moved on to creating healthy breakfasts. I got strawberries, blueberries, and a few bananas, which meant I was going back to the cutting board. I started the same process all over again. I undid the seat buckle, scooted forward, leaned toward the counter, and started cutting. Once I had all of the fruit cut up, I got the plain yogurt out and filled up my new containers. Then I put in some blueberries, strawberries, and bananas and topped it off with the yogurt. I repeated this inside the same container, creating a visual and taste-bud-pleasing, layered breakfast.

When I was done putting my meals together, all that was left was cleanup. I put everything away and did a final wash of my hands, feeling a sense of accomplishment. It felt good to put these meals together and to know I was doing something beneficial for my health.

The next day, I woke up and tried my new healthy breakfast. It tasted great, maybe because I’d made it myself. Later that day, I tried out my chicken-rice bowls, and they were great, too. The challenges I overcame in the kitchen paid off, but these were just minor challenges compared to what I was about to face.

Elijah Stacy, you are leaving to go home for the day, my teacher told me. My mom was picking me up from school to take me to my first physical therapy session. We were going to one of the best medical centers in the state: St. Jude Centers for Rehabilitation. This was located about an hour away from my house, but my mom and I wanted to work with the best of the best. We didn’t care about the distance. You will do anything when your health is in jeopardy.

Making our way to Orange County, I sat in the car with my music playing and I went through images in my head of me pulling this off. I was totally locked in and completely focused on the task at hand. I kept repeating to myself: A Small If, A Small If, A Small If.

Once we arrived, we checked in and waited for what seemed like forever. Then we were approached by a young man who did an evaluation. That lasted for five minutes because he realized his department wouldn’t be able to best help us and that we should try to get into the department across the building. The problem was we didn’t have a scheduled appointment with the newly recommended department, so we’d have to come back another day. I’d have to leave school early again and my mom would have to drive for an hour. Sometimes, unexpected problems arise, but we still have to stay focused on the goal. We can’t let distractions ruin our focus or they will ruin us.

We went across to the other building and I stayed as positive as possible as we waited in line in the new department. Luckily, they had a physical therapist available right then and there. The receptionist said she was one of the best. It was now looking like what at first appeared to be a problem turned out to be a blessing in disguise.

My therapist’s name was Reiko, and she soon came out to the lobby to meet us. She was a short, lean, serious-looking lady whom I could tell right from the start was no-nonsense. She was all business, exactly the type of person you need to push you to your limits. Reiko took us back to a room to do an evaluation. There, she asked me to slide onto a table mat that I wasn’t sure I could get on, but she forced me to try. I was willing to do anything to fix my back, so I pulled my wheelchair close and slid onto the table mat.

There, Reiko stretched me to see my range of motion as we talked about my back. I will never forget her telling me how she knew people who had the surgery and that it’s nasty and that the recovery process is long. Fear gripped me. She not only put that fear in me but identified additional problems with my health that I didn’t even know I had. She then told my mom and me that she would only work with me if I gave 100 percent effort and didn’t complain. She said if I ever got lazy or complained or even talked back, she would discharge me from PT. I was kind of surprised she said this, because during the whole evaluation I talked about how determined I was to make this happen and that I would do whatever it took to avoid surgery.

These were not the friendliest things said by my physical therapist, but I didn’t need a friend. I needed someone to push me to get the job done. Sometimes strictness is better because it keeps you focused and puts you in the right frame of mind. I agreed to Reiko’s rules and we scheduled our next appointment when we could finally start to get to work.

As I got in the car, I felt frustrated. I already knew how determined I was, but Reiko acted as though I wasn’t. Looking back, I believe this was probably Reiko’s way of making me work harder, but at that moment, I was upset. However, I turned this frustration into more mental fuel. I was going to prove my determination and intense work ethic to Reiko the next time I saw her. I told myself I would go in there and not talk but let my actions do the talking. This would be the best way to silence the doubters or people with negativity. I loved doing what people said I couldn’t do. I loved it when people expected nothing of me and then I proved to be someone to be taken seriously. I went home, excited for the next time I would have PT.

It was the same routine for the next appointment. I was picked up early from school, put my headphones on, blasted some music, and visualized myself pulling this off. I used the time in the car to get my mind ready to do battle with myself. With the right mindset, I could push my body to its limits. And of course, I kept repeating to myself, A Small If, A Small If, A Small If.

When we arrived, I rolled in ready to go. Reiko met me and she said that we were going to go hard for this first workout. I was ready to not only bring it, but to become the most intense patient she ever worked with. She directed me to the large table mats where we would be working from now on. I slid over from my wheelchair to the mat.

The first thing Reiko wanted to work on was my core strength because in theory that would strengthen my back muscles, making my spine straighter. She told me to sit on the mat and tap both hands from one side of my body to the other. This was to strengthen my obliques. I didn’t tap my hands side to side, however. My passion came to life and I hit my hands hard into the mat every time I went from side to side. I worked hard in silence and followed orders. I did this for about ten minutes straight and then we moved on to sit-ups.

I finished the sit-ups after another ten minutes. I hadn’t worked this hard physically in a long time, so I was getting sore, but I didn’t care. I was on a mission. A little soreness or a little bit of pain wasn’t going to stop me from completing my mission. For the remainder of our session, Reiko made me do something that she would later make me do over and over again. In her words, she made me move my fanny by scooting back and forth on the mat. I’d start at one end of the mat, end up on the other, and then go forward and back again. Repeat, repeat, repeat.

During the last five minutes of our session, Reiko made me do this as fast as I could. I was dead after this first workout, but I definitely proved my work ethic. I proved my dedication and intensity.

After physical therapy, my mom and I went out to eat. There’s nothing better than replenishing your body after an intense workout. It was nice to sit down with Mom and relax while enjoying the food.

The next time I saw Reiko, we went through the same exercises. She added a little bit of new stuff, and it was again a rigorous workout. However, this time she lightened up and we got to know each other. I earned her respect from our last encounter, and I found out she was similar to me in a lot of ways. We started talking about her workout regimen and she told me she got up at 5 a.m. every morning to go for a run. That fired me up to work even harder during this session.

As weeks went by, my connection with Reiko grew stronger as I grew physically stronger. It was really cool to hear stories about her kids, her college experiences, and her workout practices. She took an interest in what I did, too.

The appointment the following week is one I’ll never forget. Reiko wanted to do intense stretching. Due to the disease I have, Duchenne, and being in a wheelchair for the last five years of my life, my muscles had gotten tighter, so an intense stretch would really push my mental and physical capabilities. I laid on the mat and Reiko asked for some assistance from a fellow physical therapist. I thought, What