by Paul Long
This was the start of Noah’s courage. Despite his pain, he still smiled when he could. He put up with a month-long process of trying to figure out what was going on and never lost his spirit of peace.
On April 18, 2014, at the age of six, Noah was diagnosed with cancer. It was in his back, on his T12 vertebrae, and was wrapping itself around his spine. The pressure from the tumor pressing against his spinal cord was what was causing the pain in his lower back and leg.
Over the next week, Noah was poked and prodded, and he underwent biopsies, procedures, MRIs, CT scans, bone scans, and PET scans. All of it was scary, and most required him to be sedated. He was put under almost every day for a week, sometimes multiple times in a day. He was going through terrifying events, and we were doing everything we could to stay positive and show him strength. Who knew? It was Noah, wise beyond his years, providing us strength the whole time.
With every procedure, while Noah was scared, he would do everything the doctors asked. He would walk into hospital rooms without us and later wake up in a daze not knowing where he was and press his morphine button repeatedly to try and keep the pain from being unbearable. Despite this, we would see his smile every night as we prayed and asked God to heal him.
Noah was officially diagnosed with Ewing’s sarcoma, a bone cancer that represents about 6% of all pediatric cancer cases. There are roughly 200 children per year in the United States diagnosed with this form of cancer, so it is considered to be extremely rare. He stared chemotherapy on April 25, 2014.
Early on into his chemo treatments, Noah would get shots in his legs every night. The shots provided him a steroid that would help counteract the impacts of the chemo drugs. Chemotherapy is very hard on the body, especially that of children. One night following his shots, Noah asked his nurse if they had any superhero bandages, rather than the traditional, boring brown bandages they had been giving him. You could see the disappointment in his eyes when the nurse told him that that was all they had. The disappointment quickly morphed into inspiration, and we could tell Noah had an idea.
Noah knew what these bandages meant to kids. They were more than just a means to cover their wounds. Rather, they were a badge of courage. A badge to show others that you overcame the anxiety and pain of something incredibly scary.
A bandage could help kids identify one another too by displaying a child’s individual interests, likes, and hobbies. Noah observed that kids on his floor all wore the same hospital gowns and many were bald, so everyone looked the same. They needed something different, a differentiator, and that’s what bandages offered.
We’ll never forget the determined look Noah expressed when he entered our room one afternoon with a sign he’d made entirely on his own. It read, “If you have any Band-Aids, put them in this basket for Children’s Mercy.” He told us that he wanted to start collecting bandages so that all kids at the hospital could have cool, fun “badges” to help them get better. This was the beginning of Noah’s Bandage Project.
With the help of our friends and local news outlets, word spread quickly of Noah’s quest to find fun bandages. His project took off and people from all over the world wanted to help. We received boxes from California, New York, Ohio, and even England. Noah’s work didn’t stop with bandages though. With only 4% of federal funding going to pediatric cancer research, Noah wanted to help advance treatments and provide additional hope to the young warriors battling this terrible disease. In just over two years, Noah’s Bandage Project collected over 67 thousand boxes of fun bandages and generated in excess of $350,000 for pediatric cancer research!
Noah consistently showed a genuine interest in others—not just through the work of his project, but in his daily interactions as well. One day at the hospital, Noah met a teenage girl by the name of Brittany. Brittany, a fellow cancer warrior, had to get a feeding tube placed in her nose similar to Noah’s. Cancer treatments impact the whole body. The chemotherapy drugs not only attack the cancer but attack the healthy parts of the body causing most patients to lose a lot of weight. Some, like Noah and Brittany, lose their appetites altogether.
Brittany didn’t come out of her room much due to the embarrassment she felt after receiving her newly placed feeding tube. The tube was visible to others and, in her opinion, did not look “normal.” On this particular day, Noah was playing in the playroom when Brittany decided to come get a movie to take back to her room. She saw Noah with his feeding tube doing some crafts. Noah immediately struck up a conversation with her.
The conversation quickly led to their feeding tubes with Brittany asking questions about how he liked it and what others thought. Noah glowed when communicating how the tube allowed him to take meds without the horrible taste and how he could eat his food without doing any work. In this way, this six-year-old boy was encouraging a teenage girl not to be afraid and was helping her identify the good that comes with a feeding tube.
This was Noah. He carried with him a spirit created to help. Being appreciative of what has been given, showing a genuine interest in others, providing hope to those in need, and smiling through it all defined our little boy. He was taken from this earth on June 30, 2015, after developing a secondary form of cancer known as leukemia.
Noah never let his cancer diagnosis stop him from fulfilling the plan we feel God had for him. He looked cancer in the face and said, “I will not be afraid of you. You will not stop me from helping others.” This is the mindset that we carry in our continued work with Noah’s Bandage Project, and it is our hope that his story inspires you to do the same in your life.
I had the pleasure of meeting Noah Wilson in April of 2015.
He was a huge Kansas City Royals fan, and apparently, he appreciated the silliness of the catsuits my friend John Stoner (yes, Stoner) and I were wearing (more to follow).
I’ll never forget the day Noah and I connected. Noah’s father, Scott, invited John and me to the hospital for a brief visit as Noah was undergoing treatment. This was my first trip to the pediatric wing of any hospital, and I was overcome with emotion.
When we entered Noah’s room, Scott greeted us. He mentioned that Noah was pretty worn out but excited to meet us. As I glanced over at Noah, I felt a reluctance from him about our visit. My heart was heavy, and I worried that Noah didn’t want us there. Really though, this was my mind deciding to take on a negative perspective (you know—choosing “victim” over “victor”).
So often I find that our preconceived notions of how an experience will play out get in the way of our experiencing things as they truly are playing out. Often we limit opportunities in life based on how we FEEL things are going to go. We get an idea about a situation and let it determine how we experience it (no matter how far from reality our idea is). However, the truth is, we have no idea how things are going to go, so the best way to handle it is to be present and choose to stay positive! As you’ll soon learn, this is a foundational component of fundamism.
The feeling that Noah didn’t want us there was something I’d concocted in my head. Because I was uncomfortable and scared of seeing my own children go through what Noah was experiencing, I put that energy on him and the situation—and determined that he was unhappy with the visit.
My feelings of discomfort quickly subsided when Noah and I began chatting. The moment I got out of my head, became present in the experience, and was able to feel Noah’s calm and positive energy, was the moment our connection sparked.
Noah and I immediately began talking about the Kansas City Royals, a team that would later make its first MLB postseason appearance in 29 years. Noah’s face lit up. He began asking questions about our catsuits and our favorite Royals players, while showing a genuine interest in us both.
As I stood there chatting with this amazing boy, I couldn’t help but appreciate the moment. Here was Noah decked out in a black Under Armour shirt, beautiful bald head, and a smile that could light up any metropolitan area. This kid was battling cancer, undergoing chemotherapy, and appeared absolut
ely exhausted lying in his hospital bed. Despite all of this, I never heard one negative word out of his mouth, and he seemed completely present in the moment. I could learn from him.
As John and I prepared to leave, we gave Noah an awesome custom bowtie featuring the Hulk to symbolize our appreciation of his strength and courage. Several hours after our departure, we received a group text from Scott Wilson. The message remains one of the most memorable gifts anyone has ever given me: a video of Noah Wilson. Noah stood in the hospital hallway, connected to an IV. With a smile on his face, waving a blue Royals towel over his head, and sporting his newly acquired bowtie, he cheerfully exclaimed, “Gooooooo Royals! Thanks cat guys for coming. See you soon!” Tears streamed down my face as I watched the video multiple times.
Noah Wilson will always have a special place in my heart. Over the next few months I was inspired by his silly YouTube videos, the desire he expressed daily to help others, and his love of baseball. I even got to attend his first little league baseball game in over a year as he underwent his final stages of chemotherapy. This was a game where he went 2 for 3 from the dish and had a putout at first. The delight he carried with him from playing this game was tremendous and something none of us will ever understand. Seeing him struggle running around the bases, clearly in pain and exhaustion due to his treatment, will forever be etched in my mind. Despite my perspective of how terrible he must have felt, Noah exuded happiness, excitement, and gratitude during this experience. He was completely in the moment. Talk about a joy-filled perspective!
Noah changed my life. He provided me the perspective and direction that I’d been lacking for years. I was with him the day he passed and am eternally grateful that his family invited me to the hospital to say goodbye. This day marked the end of his pain and the beginning of his amazing legacy.
To understand the concept of fundamism and the power perspective can hold on our mindset, I found it essential to share Noah’s story. While his story is unbelievably sad, Noah found peace and strength in his purpose. A purpose he knew was defined by bringing happiness and hope to others. His purpose helped frame the pain he felt, encouraged him to fight, and gave his parents the strength they needed to carry forward. The mentality he carried—focusing on what gave him strength as opposed to what tore him down—defines fundamism.
As you progress through the remainder of this book and begin implementing fundamism in your life, remember that perspective is everything. No matter your circumstance, there will always be someone that has it worse than you. Quite honestly, they might even be handling it better and finding deep purpose in their pain like little Noah Wilson.
Find inspiration in Noah’s life story, alter your perspective, gravitate towards the things that give you strength, and appreciate the amazing things you have in life. In doing so, I promise your mindset will transform and additional opportunity—plus greater delight and fulfillment—will reveal itself.
FUN Chapter Takeaways
▪ You have a choice: victim or victor.
▪ Perspective is everything. Your perspective on a situation and on your life as a whole doesn’t just happen. It’s something you choose.
▪ Draw inspiration from the joy-filled, purpose-driven perspective Noah chose to embrace.
Next Up
I know what you’re thinking, “Wait, is this dude just going to glance over the fact that two guys were prancing around in catsuits? What exactly is a ‘catsuit’?”
In the next chapter you’ll learn the full story of how John Stoner and I became the Kansas City Royals’ Fans of the Year once we got out of our heads, stopped worrying about what people thought of us, and had a ton of fun. This “catsuit craze” will serve as part of our larger discussion of daily purposeful engagement in fun, aka FUNdamentals.
Chapter 2
The FUNdamentals of Fundamism
“You probably wouldn’t worry about what people think of you if you could know how seldom they do. “
—Olin Miller
Having a victim’s mentality never got my father anywhere. In fact, it drove a wedge between him and others to such a point that he couldn’t connect with many people and cultivate the personal relationships he desired. Knowing that everyone goes through challenges in life, what can we do differently to ease the pain these challenges create? What can we do to make the most out of every minute?
People who exude happiness and positivity typically have many commonalities. One commonality is their ability to incorporate certain FUNdamentals on a daily basis. These FUNdamentals allow them to focus on the future and forget about the drama that tends to keep us from realizing true happiness. This is a concept known as “forward-thinking.” Forward-thinking is based on the notion that we cannot change the past, we can only influence or impact the future. By finding things that help us to focus on the good in life, we can more readily move on from difficult or trying times.
Someone that I look up to very much in life once told me that if I wanted to be successful, I should mirror what other successful people do. That same principle can be applied to changing our perspective on life. If we want to be more positive and live fulfilling lives, let’s do what other positive individuals do! That’s where the FUNdamentals of fundamism come in.
Fundamism can be defined as the FUNdamentals of a FUN and optimistic lifestyle. These FUNdamentals are anything that you gravitate towards that provide you with strength, happiness, or mental release. When you’re having a bad day and it seems nothing is going right, what do you do to overcome that negative headspace? Oftentimes when I ask this question to groups, common responses are hanging with the family, playing with kids, or going out to eat with a loved one. While these are all FUNdamentals and can be fantastic experiences, relying on the presence of others to provide strength can create significant problems down the road. Let me explain.
Have you ever wondered what makes breakups so challenging? If you’ve experienced a terrible breakup in the past, I’m sure you can relate to the roller coaster of emotions that soon followed. Why? Is it because we feel a sense of failure, rejection, or sadness that comes along when a large chapter of our life comes to an end? Those are all good answers. However, I believe that the biggest struggle after a breakup is finding strength in yourself again, without the dependency of others.
Relationships come with sacrifice, which means that many of the things we did for FUN before getting together, are exchanged for more couple-friendly activities. The same phenomenon can take place once children enter the mix. This is perfectly acceptable and natural in life’s cycle. Where it can become a problem is when you lose a part of your identity and lack the ability to find things that give you strength without the help of others.
Challenge yourself to come up with five or more things you do for FUN without depending on others now and write them down below. These are your FUNdamentals! How many more can you come up with?
Side Note: If you haven’t already, make sure you grab the Fundamism Workbook, where you can write down the answers to all the exercises provided throughout this book. Grab your copy here: www.pauljlong.com/freepdf
Meditating, singing aloud, exercise, listening to music with purpose, enjoying a great meal, dressing up in a funny costume, going for a walk, and playing a board game can all be considered FUNdamentals. There are a million of them out there but not every FUNdamental will be FUN for you.
Throughout this book, I’ll provide you many examples of FUNdamentals that have worked for others and myself in our lives. The purpose is not to have every FUNdamental appeal to you, but rather to provoke thought and drive you to incorporate more of those that give you strength into your daily life. By implementing FUNdamentals daily as other positive people do, we can realize our own potential in leading the you-filled life we all desire.
The Catsuit Craze
What’s your biggest fear? Snakes? Public speaking? Perhaps you’re like Dwayne “the Rock” Johnson’s character in the movie Central Intelligence and you are petri
fied of people seeing you naked? Think about your fear for a second … Got it?
Now think about experiencing that fear and having your reaction exposed on a stage with millions of people watching. This was the situation I found myself in when my best friend convinced me to do something bold.
The date was June 8 in the year of my Kansas City Royals’ resurrection, 2014. Derek Jeter and his New York Yankees traveled to Kauffman Stadium, home of the Kansas City Royals. Kauffman was also my best buddy, John Stoner’s and my favorite weekend getaway. Jeter announced his intention to retire at season’s end and was in the middle of his farewell tour. Fans in every Major League city were coming out to celebrate Derek Jeter’s storied career, coming up with creative ways to say goodbye while thanking him for being an ambassador to America’s favorite pastime. John and I would not be outdone.
Weeks prior while surfing the interwebs, John found some ridiculously outlandish wrestling singlets featuring a large profile pic of a cat on the front and back. He called me immediately.