Everyday, I wake up trapped in a prison. I have been trapped in this cell for over 27 years, and the only way I am ever getting out is when they put me in a pine box 6 feet under. This is not your typical 6 foot by 10 foot concrete box though. I am serving a life sentence trapped in my own body due to the fact that I was born with the genetic, neuromuscular disease, Spinal Muscular Atrophy Type II (SMA). In a nutshell, this disease prevents me from building any muscle, which causes numerous health problems such as extreme weakness, breathing issues, and scoliosis. My physical disability has prevented me from ever walking, and I have used a wheelchair my entire life. I have had numerous surgeries, and I am hospitalized for respiratory infections at least twice a year. I also suffer from severe chronic pain that on the good days is merely tolerable, and on the bad days is something I wouldn’t wish on my worst enemy.
Despite the fact that my disability has made my life harder in nearly every way, and despite the fact that I am imprisoned in this flesh cage that gets weaker every day, I have managed to create a happy, successful life. I have degrees from the University of Notre Dame and the University of Kansas. I live on my own outside Kansas City, and I work as a professional speaker and blogger. I have loving friends and family, and my hobbies include cooking, reading, and movies. Even though my disability has presented a multitude of obstacles that I have had to overcome in order to build this life for myself, it has also taught me several valuable life lessons. Without the insights and knowledge that I have gained from living with SMA, I would not be the strong, successful, confident person I am today, nor would I be able to improve the lives of others by passing on this wisdom through my work as a professional speaker. Since my mission through speaking and writing is to help people learn to live happier, more fulfilling lives, and because my mother always told me that you should share, I thought that I would take some time to provide you with some of the lessons I have learned from living with SMA and growing up using a wheelchair. These nuggets of knowledge have been invaluable resources throughout my life, and I trust that you will find them just as useful. Plus, in sharing the positives that have come about due to my disability, it adds meaning to my life and takes away the power of this horrible disease. Without further ado, here are some words of wisdom from my wheelchair.
- Patience. When you need assistance to accomplish pretty much anything, patience is something that you learn very quickly. Whether it was moving into another room, using the bathroom, or even just getting out a certain toy to play with, I was going to have to wait to do it until someone was free to lend a hand. So at an early age, after numerous instances of getting upset and frustrated at having to wait to do something, I realized that whether I liked it or not, I was going to have to sit tight until someone was ready to help me. I could get mad and scream in anger all I wanted, but I was still going to have to wait for what I initially wanted, and in getting so enraged I was only giving up more of my power to my disability. I had already lost my physical power to my SMA, I sure as hell wasn’t going to give up my mental and emotional power too. I decided that the minimal amount of time that I lose from having to wait on others is not worth the emotional toll of getting upset. Also, there are very few decisions in life that are so important or time sensitive that they cannot wait for a few minutes, especially as a child, and with some careful planning you can cut down the amount time you wait.
- Planning Ahead. That brings us to our second lesson, being prepared and thinking ahead. Just like the boy scouts, when you live as a disabled person in an able-bodied world you have to always be prepared. When you are disabled, it’s not as simple as deciding, “I want to go to the park for a while,” grabbing your keys, and heading out for a fun day in the sun. For someone in a wheelchair, you have to think about how wet and soft the ground is for your chair, is there close handicap parking, does my wheelchair and other equipment have enough battery life, is it too hilly for a wheelchair, and a million other things that if not accounted for will ruin your trip. I can remember being only 7 years old and in second grade when my teacher, Mrs. Bostwick, announced that we would be taking a field trip to an old, Amish farm. After school I went up to her anxious and upset, because I was worried that the farm would not be a place where power wheelchairs could really get around, and I asked her tons of questions about the lay of the land and such (it turns out that the farm had been commercialized enough that my chair did fine). I was only 7 years old, and already the great importance of planning ahead and being prepared had been deeply ingrained into my brain. As much as I wish I had gotten a few years of floating through life with the carefree innocence of other children, by learning and developing this life skill at a young age, I was able to avoid putting myself in potentially harmful or frustrating situations. It also taught me that by thinking ahead and being aware of all of the obstacles in your way, that you can usually find a way to overcome the challenges in front of you and turn a difficult situation into an enjoyable experience.
Problem Solving. Living with SMA means that there are going to be things that my body will not allow me to do, at least not the way typical, able-bodied people do them. It became apparent to me early in life that I was going to miss out on a myriad of incredible experiences if I didn’t learn to adapt myself to the situation at hand, turning something I can’t do into something I can do. I learned how to do this by watching my parents and loved ones work tirelessly finding ways to make sure I experienced as much as possible in life. My grandfather, despite having minimal formal education, was brilliant when it came to finding creative solutions to overcome the obstacles in my way. Over the years he built devices like a self-casting fishing rod, a lawnmower that attaches to a wheelchair, and a custom made, removable lap tray for my chair, just so I could experience things like fishing or yard work (I could have done without that one). He would say, “Scott, if you put down a normal mousetrap but don’t catch a mouse, you don’t just throw up your hands and let the mouse go on eating your cheese. You go build a better mousetrap.” This sage like advice has helped me learn to focus on solutions to the problems stopping me from doing something, instead of the problems themselves. By cultivating my ability to think outside the box, find creative solutions, and “build a better mousetrap,” I have gotten to experience numerous parts of life that I would have surely missed out on without this skill.
- Mental Toughness. Even with all of the careful planning in the world and after hours of creative problem solving, there are still going to be some things that I am just not going to be able to do. This is a fact of life that you have to accept when you live with a physical disability. Accepting this unfortunate reality does not make it any easier to cope with however, especially for a child. Even though you know that you cannot go down the water slide, as you watch all of the other kids going down it howling with joy again and again, you can’t help but feel frustrated and discouraged that you cannot participate. In order to not let the few things that you can’t do take away more from your life by being upset, you have to develop mental toughness. By learning and applying positive thinking techniques, such as focusing on everything you can do and not what you can’t do, and experiencing and enjoying things vicariously through others, you can manage these feelings of disappointment when they occur. This mental fortitude becomes increasingly important over time, as this degenerative disease slowly and methodically wreaks havoc on my body, taking away more and more of my freedom. By building this mental strength you will not let the fact that you are disabled impact your happiness, and you will lead a much more fulfilling life.
- Appreciate the Little Things. Whenever I am in the hospital for a while or stuck on bed rest for a few days, it is always the little, seemingly insignificant things that I miss the most. It’s trivial stuff like playing “Angry Birds,” poking friends on Facebook, and taking that first spoonful of Apple Jacks during breakfast that I can’t wait to get back to. Having had to go through numerous periods where I have been away from my “normal,” daily life due to illness or injury, has taught me how crucial it is to slow down and take the time to appreciate the small things. Whether it’s the smile that comes to your face when you first smell your morning coffee, the pleasure you get from mindlessly channel surfing, or the warm, fuzzy feeling you are filled with when your warm, furry dog curls up beside you, take a moment to really take in that feeling and let it wash over you. Let it completely fill you with happiness. These are the things that are unique and special just for you, and when the time comes that you can no longer do them, these are the types of things that you will miss the most. Fill your life with as many of these moments experiencing the little things you love as you can, and you will be well on your way to a happy, fulfilling life.
These are just 5 of the hundreds of lessons that I have learned as a result of growing up with SMA and in a wheelchair. Even though my life will be significantly shortened by my disability, and the fact that I would give almost anything to be physically healthy, I am grateful for the life lessons I have learned from it. They have given me the tools to create a happy life filled with new, exciting experiences. Additionally, they are what led me to my true calling of passing on this wisdom to others. This mission to help people has given my life meaning, which has brought me a whole new appreciation and enjoyment for my life. By developing these 5 life skills, you too can bring more happiness and success to your life. So be patient with the people in your life, plan ahead to avoid potential problems, and if you get stuck just “build a better mousetrap.” When you fail don’t let it keep you down, and make sure that you take the time to appreciate the little things. I am sure you will find, just as I did, that with these tools at your disposal, you appreciate your life in a whole new way.