01/20/2014 03:36 pm ET Updated Mar 22, 2014

We're Cheated When We Say We Can't Understand

I love people who don't do what's expected, especially when things go wrong. A little over a week ago Sam Berns died. He had just turned 17 in October. I didn't know Sam, though from watching his film, Life According to Sam, I wanted to know him. At two, Sam was diagnosed with Progeria, a genetic condition that accelerates aging. Doctors told Sam's parents, both doctors themselves, that Sam would most likely only live to thirteen, the average age for children with Progeria. Life started with a death sentence as all lives do, though most of us are allowed to indulge immortal delusions because we can't comprehend the time and space for that inevitable end. Sam's was comprehensible. He came with an expiration date, but that didn't stop him from living. Boston professional sports teams and Dave Matthews embraced him, but his bucket list was extraordinary in its ordinariness. He fought to play the drums in his high school marching band. Marching with a drum forced the fifty-pound Sam and his family to find a way to carry the forty-pound drum. He studied hard even though odds were against him living to college age. His mother dedicated her research to a cure and battled the labyrinth of drug regulation to extend the lives of a tiny part of the world's population like her son. They fought and they lived with one end too far away to decipher and another too close to allow hope, and they made us better for their fight and their lives because they showed the dignity and discipline that is life even and especially when we don't understand.

Growing up as a ski racer I learned the story of Jimmie Heuga early in life. He and Billy Kidd were the first Americans to win medals in Alpine Skiing at the Olympics. In Innsbruck, 1964, Kidd took silver in the Slalom and Heuga followed him with the bronze. They went two, three at the Olympics. Six years later, at 26, Huega was diagnosed with Multiple Sclerosis. At the time doctors advised against physical activity because they believed that it exacerbated the problem. Jimmie challenged the belief with physical activity. About thirty years after the diagnosis, I met Jimmie. I have to admit pangs of excitement and nervousness when I met this legend. He was a man who'd won a medal in skiing for the U.S. and he was a man who flipped the paradigm. He'd gone from skiing standing up to skiing sitting down by that point, but he was still skiing. Our clocks tick at different speeds and with more or less wind to the gears. It's not how quickly they tick or how long the ticking lasts, but how we approach the moments that we have little and big because both are just as meaningful to the overall picture.

I often have people tell me that they couldn't do what I've done. They mean it as a compliment, that I've made a lot of a life in a wheelchair, and I know that, but it misses the picture. They couldn't have done what I've done... what? Continue? The choice was pretty simple as far as I could tell, move forward trying to make the best of what I could (and I don't think I'm alone in that), or stop. I've had people ask me point blank, "Did you ever think of killing yourself?" and they seem surprised when I say no. Their question doesn't flatter me or the value of a human life. One time at lunch a friend told me all about how she almost lost her husband to cancer and then in the same breath said that it was nothing compared to my situation. I can't say that I can understand Sam's situation exactly, or Jimmie's or my friend's with the sick husband, but we've all struggled. We've all felt pain. And while I've heard that the pain of losing a spouse is one from which you never recover, if we say that we can't understand what someone is going through just because it's another color on the spectrum of our experience, then we lose so much of what Sam and Jimmie taught us: that we as human beings will experience pain, heartache and loss, and that we have an amazing ability to persevere and find joy in both the large and the small, the glamorous and the mundane, and that's what gives us life. That's why the clock still ticks.