PROLOGUE
I truly miss my brother. Everyone in our lives fills a part of us that we do not truly see until it is gone. The part I realized I missed most was the engaging conversation that Evin and I would share. Evin was engaging, thought provoking, justifying, and even to some extent infuriating, but never boring.
Evin and I grew up among avid conversationalist. One of our fondest memories revolved around a great debate between our uncles over the gun control rights. While our other cousins were content to run around outside and play, Evin and I just sat and watched, wide eyed as these two grown men battled one other with their thoughts and ideas.
This was the relationship that Evin and I shared so often on my visits home and what I miss most. We would debate one other on any topic and in any circumstance and attempt to challenge the very nature of the world we lived in. It was Evin’s way of engaging the world and Evin’s way of helping the world. For us it was both a game and it was serious, but always with a mutual respect and love for one another. Well, maybe it could have been done with a little more love.
It was during one of these late night discussions that took place three years before Evin passed away when he and I were discussing the challenges that Evin had to face. For almost all of my life I had personally witnessed the struggles Evin dealt with. From pushing his wheelchair up a steep ramp into the car, carrying him up the stairs, helping feed him and even taking him to the bathroom I was a personal witness to the struggles of Evin's life. This night however, I realized how Evin must have felt to be the one being pushed or carried or fed. While I would never venture to say I could truly appreciate his personal challenges, I couldn't help but be inspired by Evin’s journey. So that evening I recommended he write out his life story so that others may be inspired.
That evening began the concept and vision of this books outline. Evin was unable to write by himself due to the physical challenges of his life, but that never stopped him from accomplishing his goal to help others. Over the next several months Evin would either speak into a voice recorder or call me to type out his thoughts. As I became more invested in my career I pulled back from helping him, but I was encouraged to find out that Evin continued telling his story just the same.
It is incredible to think that Evin finished what he set out to accomplish in writing this book and as you read his journey you may find yourself engaged, provoked, laughing, crying, angry or even inspired. But one thing is sure when Evin is involved, it will certainly not be boring.
Epilogue
Evin knows what it’s like to be Abled in a Disabled World, because he lived it. His body was twisted to the visual eye, but his spirit and heart was straight as an arrow. He knew how to love, be loved, as he shared his gifts with the world. There was never a minute he didn’t leap at the chance to sing, clown around, poke fun at you, or test your limits. He was good at pushing boundaries, whether they were personal or societies. Hopefully, you paused for a minute as you read this book to truly capture the essence of Evin’s truth.
I’m not really sure what Evin had in mind when he started working on this book project, but I can clearly see the value of his deposits. Unless you have a disabled person in your family, you tend not to think about them, and when you see one on the streets or out in public, we tend to stare, or shift our eyes, but never approach to better understand. Evin understood this dynamic and it never disturbed, or seemed to bother him. He was on a mission to right-steer society in the right direction, with the few days he had on earth. He had the insight of pushing society’s buttons that needed to be pushed.
Thank you for entering into Evin’s life by reading this book and hopefully getting to know him a little better. It’s not possible to read his story without thinking introspectively about your own life, and how much we too easily take things for granted. Evin showed us how to live life to its fullest, every single day. Even in death, he continues to inspire, encourage, challenge, and remove barriers with this story. Rarely will we ever have the chance to truly touch someone from inside out, and Evin has done just that in a mighty way with the words on these pages.
This is a seminal work that allows you to see the world from the eyes of a person with muscular dystrophy. It’s important to keep your eyes open as you put this book down and start today by making a contribution to those with disabilities so they too can live life to the fullest. Evin lived his whole life knowing his days were numbered, and every single event or activity could possibly be his last. I want you to deeply imagine the mental pressures these types of thoughts can cause. Most people in Evin’s condition may ask, “Why me?” Evin’s story is proof-positive of his response, “Why not me!” Evin realized that he had a divine purpose, and that was to positively influence those around him, and then later in death to change the world.
Are you up to the challenge of making a significant difference in your life? Evin showed us how to live. While a youngster he did not make excuses for his looks, or limited capabilities, but used what he had and learned to change the conversation from himself, to others. Once in his wheelchair, he liked to go fast! When at camp he was first to participate in every activity, while at home he played hard with his brothers, pushed his parents to realizing new boundaries, and at school would not accept established norms, by creating his standards. What more is possible in your life if you merely leverage Evin’s courage to dare? Evin dared us to accept everyone around us, and give them the same opportunities you desire, without passing judgement, and viewing each person as an equal.
Abled in a Disabled World has a way of bridging the gap between sanity and insanity. Just when you think you’d be ready to throw up both your hands and give up, this family finds the fortitude and most importantly love to rely on. Their love conquered all through the missteps, shortcomings, and oversights. Evin made everyone around him pay close attention to the smallest of things, because everything counted! Every second, every event, every activity, every word, every everything had to be considered. While most people would be completely fatigued, the Hartsell’s could not afford to get exhausted, because Evin would not let them. His mission in life was unconditional, and he lived it the way it was intended.
The Hartsell family was blessed to provide stewardship for Evin during his brief time on earth, and they did a remarkable job. Most days they did not have all the answers, but had to rely on their deep faith and trust in God’s plan. After reading this book you experienced the highs and lows of this family, and witnessed times where they felt like giving up. Several gut-wrenching near-death experiences are accounted, as well as times both parents felt like pulling their hair out because they did not know what to do! Being a military family has unique challenges on its own merits, and meeting the demands of having a handicapped child is doubly taxing. Moving from base to base, forcing the children to change schools was difficult and securing full time, around the clock medical assistance for Evin was even more challenging. Through it all this family stuck it out, by making the best of every situation.
I am honored to play a small part in this project, and we realize there are several others who actually knew Evin, and had the chance to witness his brilliance on a daily basis. If you had the opportunity to meet Evin, consider yourself extremely fortunate. Evin may be gone from our eyesight, but his legacy lives on in his words. We hope you cherish his experiences, and use it to improve your life and others. Become Abled in a Disabled World!
