I always find it hard to tell people about who I am. It is such a big question with so many answers. I am many things (i.e. a brother, son, speaker, student, friend). Also, since I speak about my life, if I give away too much I will not have anything to speak about (No spoilers here! To get the juicy details hear me speak!). So, instead of answering the difficult and revealing question of who, I will answer another, easier question (something your brain does regularly, attend one of my workshops to hear how!) and tell you a few of the what’s.
I am a born-and-raised Midwestern man in my late twenties. I am the second of
three children with an older sister, Stephanie, and a younger brother, Ryan. My parents, Dan and Liz, both taught public school and have been happily married for 30 years. I lived in a tiny town in Northern Indiana my entire life until I went off to college. I studied mathematics and life sciences at the University of Notre Dame (Go Irish!) and got my Masters in quantitative psychology at the University of Kansas (Rock Chalk Jayhawk!). Reading all of this, you probably are thinking “This guy just seems like an average Joe.” You would be right, except for the fact that I was born disabled and have spent my entire life in a power wheelchair.
I was born with the genetic, neuromuscular disease, spinal muscular atrophy (SMA) type II. Without getting technical, basically this disease has prevented my body from building muscle since I was about 18 months old. So as my body’s bones and organs grew, my muscles didn’t. Obviously, this makes your body very weak, but it also indirectly causes several other life-altering issues such as chronic respiratory infections, chronic pain, brittle bones, and spinal scoliosis. Fortunately, however, my mind is not affected negatively by this disease, which is something I am forever thankful for.
Having never known life outside of a wheelchair, and thanks to the amazing job my friends and family did in never treating me differently due to my disability, I grew up feeling like a normal kid even though I knew I was different. I definitely had some experiences that were unique from my peers’ (Hear me speak to hear some!), but my life felt very normal. This feeling has never left me, but as I started maturing from a child into a young man, I started noticing that my life was becoming more and more different from the “normal” person’s.
My life took a major turn when I was 15 years old. It was at this age that I had my first near death encounter from a major respiratory infection. I don’t remember much, but I stopped breathing twice, had both lungs collapse, and got trached twice. It is a direct result of this experience that my mission to help people started to take shape. The amount of support and love I got from so many people truly moved me, and I wanted to give that feeling to others. I was in the hospital about a month, but I think mentally and emotionally I grew into an adult over that time. My priorities changed, as well as my behavior and approach towards life. I did eventually recover with a new sense of self and passion for life, and went on to graduate from high school valedictorian of my class.
Right around when I graduated, the second major change in my life occurred. I had been accepted to the University of Notre Dame, and I wanted to get the same college experience as my peers, complete with keg parties, freshman hazing, pep rallies, and yes, the occasional class. In order to truly get that experience, I needed to live on campus in the dorms like everyone else. As committed as I was to making this happen, my mother, who had always been my most vocal advocate, was that committed against it. Now realize, as I do now, that her stance was not formed because she didn’t want me to achieve my goal, but was based on fear. She was afraid that if she was not there to be my “safety net,” that something would happen to me. Regardless of the reason though, she did not assist me in making the numerous preparations for creating a safe, liveable college experience. As angry as it made me at the time (we didn’t talk much that summer), I am that thankful that it happened looking back. Her absence forced me to step-up and advocate for myself as an independent person. This trying experience not only taught me numerous life-lessons that I discuss in my Roll Models talks and workshops, but also showed me how other people can draw strength and inspiration from my life. This was another major ingredient in creating Roll Models. As these lessons were percolating within my brain, I did go off to college, spent 4 years living in Keough Hall, got the “complete college experience” I was looking for, and even managed to graduate with a bachelor’s degree in mathematics.
The Fall of my senior year I got accepted to study quantitative psychology at the University of Kansas. This would mean moving 12 hours from my family to a place where I knew no one. If my mother was against me living an hour from home in the dorms, I am sure you can imagine her reaction to me wanting to move to Kansas. I was once again however, not willing to settle. Through a lot of work, a touch of luck, and the support of my brother, Ryan, I made the transition successfully (but I will admit not smoothly), and I have been living in this area ever since.
Learning to live on my own, as a disabled person, forced me to do a lot of introspection about life and what I wanted out of the time I have. I began to notice that my life experiences had taught me so much about life. The obstacles I had faced taught me many things which I took for granted, but I slowly noticed that most of my peers, as well as many people much older than me, did not know. I started thinking that perhaps I could help others avoid learning these lessons the “hard way”, like I did. The various ideas that had been floating around my mind began to take shape into one powerful mission. I realized that by sharing my story with others, I could pass on my knowledge about life, success, and happiness, and this was the best way to fulfill my great passion for helping others. Out of this epiphany, and countless hours of brainstorming, discussion, and meditation, Roll Models emerged.