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Wade Heath: Teen with terminal illness offers important life lessons

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Posted: Wednesday, April 16, 2014 12:00 am

Sam Berns grew up with a genetic disorder called progeria. The disease affects only about 350 children worldwide and comes with the unfortunate side effects of rapid aging, heart disease, stunted growth, tight skin and lack of weight gain, to name a few. Progeria is found to end most lives by the young age of 13, since there is no known cure.

Sam was one of those rare cases that not only lived to 13 years old, but well beyond the dire prediction, and at 17 years old gave a speech at a TED conference last year that may go down as his defining legacy.

It was in that speech that Sam, who had the odds stacked against him the moment he was born, shared with the audience there in person and those watching online his “philosophy for a happy life.”

Sam’s first rule was: “I’m OK with what I ultimately can’t do, because there’s so much that I can do.”

As you can imagine, there are a lot of limitations for a young person with progeria due to their frail size and strength. But Sam admitted that even he pushed the limitations of what he could do.

It was his dream to play the snare drum in his high school marching band, but the equipment and harness nearly outweighed him. That was, until he and his family figured out a solution, and through some re-tooling with an engineer not only dramatically lightened the load he was to wear if he wanted to play, but also made sure he could live his dream playing alongside the marching band.

Sam’s second rule: “I surround myself with people of high quality.”

Sam mentions that his amazing, supportive family has been a cornerstone of his life. Also, his friends, who he referred to as “band geeks,” enjoy each others company and see each other for who they are on the inside.

Sam said he loved being in a group like band because the music they make together is true, is genuine and “supersedes progeria.” The people in your life, he said, make the most significant impact on it (good and bad), so make sure they’re people worthy of your time and talents. Your mentors and your community matter when it comes to your happiness.

Sam’s third rule is: “Keep moving forward.”

Sam suggested that you should always have something to look forward to — whether it’s as small as going to the next high school football game or on a bigger scale like planning the next big family vacation.

He mentions in this part of the talk that hanging out with friends and having plans for uplifting activities help keep him focused on knowing there is a bright future ahead.

“It may get me through some difficult times I may be having,” he said.

Sam also confided that having something to look forward to allows him the opportunity to stay in a forward-thinking state of mind in which he tries hard to not feel bad for himself, because if he does, he gets trapped in a paradox.

“It’s not that I ignore when I’m feeling badly. I let it in so I can acknowledge it and do what I need to do to move past it,” he said.

As I listened to Sam, what fascinated me was his optimistic tone. Here was a teenager facing death at any moment, already having beaten the clock, and he spoke as though his disease was but a speed bump on his way to greater things.

“I’d like to be a biologist,” Sam went on to say about his future plans of study.

Unfortunately, Sam Berns won’t get to live that dream. He passed away in January of this year due to complications from his disease.

Sam’s lecture — as well as an HBO documentary that tells his story, entitled “Life According to Sam” — have helped me to realize that my own obstacles and challenges in life are petty compared to his. His points have helped me to redefine what it means to be happy in the simplest terms and how truly wonderful it is to wake up to the gift of life each day.

The next time you’re feeling down or upset, think of our friend Sam and remember there are three ways that you can find your way back to happiness.

Wade Heath is the founder of DoGoodBeGreat.com. Contact him at wade.lodi@gmail.com.

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