Kicking off a new theme week of amazing humans I just had to start with Sam Berns. Sam Berns was the subject of a documentary called Life According to Sam. Sam suffered from progeria – a condition which has a life expectancy of 13. The documentary shared the journey of Sam and his doctor parents trying to fight the race against time to find a treatment to prolong Sam’s life.
Being from Australia I haven’t had the opportunity to watch Sam’s documentary. I first learnt about Sam from watching his Tedx talk last year. I watched it several times, each time coming away with a new insight, a new awareness. I remember feeling sheer sadness when I heard that Sam died in January 2014, only three months after giving this talk, a talk which has since become his legacy.
What is progeria
Sam Berns was diagnosed with progeria as a toddler. Progeria is a rare condition affecting only 35 kids worldwide that accelerates ageing. The symptoms are typically tight skin, lack of weight gain, stunted growth and heart disease. Sam’s mum, Dr Leslie Gordon and her team of scientists published the first successful progeria treatment study. This led Sam to being interviewed on NPR by John Hamilton were his was asked “what is the most important thing that people should know about you?” Sam’s reply “I have a very happy life” and perhaps that question what the catalyst for the topic of Sam’s Tedx talk – happiness.
Sam’s philosophy for a happy life
Just as progeria was only one part of Sam’s life, progeria was not the main topic of Sam’s Ted talk. The core message that Sam wanted to share was how we can achieve happiness in our everyday lives. There are three aspects to Sam’s philosophy.
1. Be OK with what you ultimately cant do, because there is so much you CAN do
Looking at Sam, of course it’s human nature to initially put progeria in the front of mind. The visual cues are there, but for Sam himself, and I’m sure for those who knew him, progeria wasn’t the focus. Sam simply didn’t dwell on what he couldn’t do, most of his time was spent “thinking of anything other than progeria.”
Sam admits that this didn’t mean that he ignored the obstacles of his condition. He knew he was missing out on some actives, but he chose to instead focus on the activities that he could do. Sometimes this meant that Sam had to do things differently and make adjustments to put them in the “can do” category. Sam illustrates this point by sharing a dream he had to play the snare drums in the Foxboro High School band. Logistically the weight of the drums meant this wasn’t a feasible option for Sam – it was just too heavy for his body weight. However, nothing was going to stop a determined Sam playing the snare drums with the school band, so with the help of his parents and an engineer a light-weight snare drum harness was designed that let Sam reach this dream.
2. Surround yourself with people you want to be with
Sam urged us to appreciate the people in our lives, our friends, our family, mentors and people in our community. Sam choked up as he explained that it is the people who make up his everyday life that create the positive influence in his life. It was truly touching moment and you could easily see that family and friends mattered to Sam above anything else.
This reminded me of a quote by John Rohn “You are the average of the five people you spend the most time with.” I always keep this quote stored at the back of my mind as a reminder that it’s okay not to want to spend time with people who bring me down.
3. Keep moving forward
Sam believed that having something to look forward to was important. It didn’t have to be something big – a new comic book release or hanging out with friends, the point is that anticipating something in the future helps keep us in a future state of mind and can help get us through obstacles that we are facing.
Wise beyond his 17 years, Sam said something really poignant that stood out for me. “It’s not that I ignore when I am feeling badly, I kind of accept it. I let it in, so that I can acknowledge it, and do what I need to do to move past it.”
It’s kind of strange and surreal to mourn someone I have never personally met, but I think that’s the affect that Sam had. I am in awe of the strength and positive outlook he had in the face of adversity. He spoke from the heart and was genuine. If you haven’t already watched this Ted clip, please click play and let’s Sam’s words live on.