Three years ago, HBO produced a documentary about Sam Berns called "Life According to Sam." I had not seen the documentary until earlier this year. It's a remarkable story. I don't think anyone can watch this documentary about this amazing young man and his two loving parents and not be deeply moved. The documentary does not play on sentimentalities, but it will surely make you cry, especially knowing now that on January 10 of this year, Sam Berns died due to complications from Progeria (Hutchinson-Gilford Progeria Syndrome), a rare and fatal genetic condition which is characterized by an appearance of accelerated aging in children. Most children with Progeria do not live past their teens. When I saw that Sam had passed away, I felt so sorry for him and for his family. But pity is not something Sam would have wanted anyone to ever feel about him.
A great talk & life advice from Sam Berns
Sam gave a talk last October at TEDxMidAtlantic in Washington DC. This video below of his talk was posted in December, just about a month before Sam passed away. Sam touched the hearts of a lot of people while he was on this planet, and through this presentation he will continue to do so. 17-year-old Sam Berns gives us some good advice, but he also demonstrate how to tell your story in 12-minutes in a way that is simple, clear, and engaging.
Sam's approach to telling his story
Sam does not start off his presentation by talking about Progeria because his whole point—his theme—is that the disease is not the biggest part of his life. Instead he begins with a short story from his life about a challenge and overcoming that challenge without even ever mentioning the disease. That was what his life was like: Overcoming and moving forward. Sam opens with a mini-story where he tells of his deep desire to play snare drum in the high school marching band. The problem was the frame for the snare drum weighed 40lbs, but Sam only weighed 50lbs. A clear conflict. He was devastated by the reality that he would be unable to fulfill one of his dreams. His body was not up to it though his spirit was. We learn, then, that he was, however, able to work out the problem thanks to the kindness and brilliance of an engineer who created a special snare drum frame that weighed only 6lbs. Right from the start we have a story of conflict and resolution. Morerover, the snare drum story returns later on in his talk with added significance.
Sam does get into the facts of what the disease is—this is part of exposition if you will. The audience needs this knowledge to understand what follows and to appreciate just how remarkable his wisdom is given his difficult circumstances. We usually reserve wisdom for the old, obviously because they have been through so much. Well, Sam too, although only 17, had been through a lot. Sam recalled that when he was asked by an NPR interviewer "What is the most important thing that people should know about you?" His answer was "I have a very happy life." Sam said that Progeria did indeed present many challenges but that people should not feel sorry for him. Besides, he said, he was able to overcome most of the challenges anyway.
"My Philosophy," he said, "has three parts, essentially." Sam then prefaces his list of three with a quote from the movie Ferris Bueller: "Life moves pretty fast. If you don't stop and look around once in a while, you could miss it."
(1) "Be OK with what you ultimately can't do, because there is so much you CAN do."
Sam said he is very much aware of the things he can't do, like ride a roller coaster, but instead of focusing on that he instead focuses on the things he can do, and the things he is passionate about. Sam said you can put somethings that were impossible or out of reach before in the "can-do category" by making adjustments. To illustrate this point with an example he plays a clip of himself with the marching band, the story he opened with, which further illuminates his theme or his core message.
(2) "Surround yourself with people you want to be around." Sam talked about the importance of having high-quality people and great friends in your life, and a close family. "We see each other for who we are on the inside," Sam said of his friends and loved ones. You can see Sam gets choked up when talking about how the relationships in his life supercede even all the other positive aspects of his life. Our friends, our families, our communities, Sam said, are really the things that can make a huge difference in our lives.
(3) Keep Moving forward. Here Sam quotes Walt Disney: "Around here...we don't look backwards for very long. We keep moving forward, opening up new doors and doing new things." Sam said he was able to get through difficult times by always having something in the future to look forward to, even if it was just a small thing like a new comic book or a football game. "This mentality includes staying in a forward-thinking state of mind. I try hard not to waste energy feeling badly about myself, Sam said, because when I do I get stuck in a paradox where there is no room for happiness or any other emotion."
Sam was so positive and so optimistic about his future. "No matter what I choose to become, I believe I can change the world. And as I am striving to change the world, I will be happy." He showed a clip from the film which he said emboddied his philosophy. Even though he had change in four years, he said, his philosophy had not. Sam told a story at the end of being very sick. It was a time he had to use all his strength and put his philosophy to the challenge. It was the three keys above that saw him through the roughest times, he said. "Being brave isn't supposed to be easy," Sam said. "But it's the key to moving forward."
"Being brave isn't supposed to be easy, but it's the key to moving forward."
Sam's talk is a beautiful thing. It is positive, authentic, and from the heart. His presentation is a wonderful contribution that is continuing to touch people, and inspire them to live life as fully as they can.
Thank you, Sam. You live on in more ways than you could have imagined.
• Progeria Research Foundation
• Foxborough field to be named after Sam Berns
• Life According to Sam website