Tuesday, February 25, 2014

Are we even the same species?



For 25 years, I’ve worked with medically fragile populations. Sooner or later they find themselves forced to the edge of a precipice.  Balance gets increasingly difficulty until they do a header off the edge and flail a bit before they hit the bottom. 


Most people come to some level of resignation where hope of surviving the free fall becomes hope that when they do fall it will be less horrifying than it looks. 


Occasionally people panic and they create a vortex of chaos that threatens to pull everyone off the edge.  


But a handful of times I’ve run across a really amazing person.  On the spectrum of enlightenment, they have evolved so far beyond the rest of us that they seem to be a separate species. 


I should also say that one of the hardest things I've ever done was work trauma at a children's hospital. If you are one of those remarkable people who can do it, then you have my adoration and my gratitude. 


This is Sam Berns, 17 years old.  He has Progeria, a genetic disease that rapid accelerates aging.  I didn't know him but he is mirror of those few that I have been lucky enough to meet. 


Sam was asked by a reporter, “What is the very most important thing that people should know about you?” “I have a very happy life.”


“I think I really lucked out on the parent lottery.” Sam’s parents are physicians.   They started the Progeria Research Foundation and his mother identified the gene that causes the disease.


“I’m OK with what I ultimately can’t do, because there is so much I can do.” 


“Put things in the 'can do' category by making adjustments. . . Keep moving forward.” 


“Being brave isn’t supposed to easy.” 

My philosophy for a happy life.


Sam was scheduled to be the be an honorary Patriots captain for the game a few days after he died. Patriots owner, Robert Kraft, donated $500,000 to the Progeria Research Foundation. He sent out a written statement after Sam’s death. 


“I loved Sam Berns and am richer for having known him. . . I am so lucky to have had the opportunity to spend time with him and to get to know his incredible family.”



Boston Bruins, NFL Player Brad Marchand responded with this, “The warrior, Sam Berns passed away today.  He was an inspiration to everyone. You will be missed greatly.  Fly High.”

1 comment :

Anonymous said...

NPR had a great interview with his parents about the documentary. J