I think a lot about how ironic it is that we get judged by our exteriors. It occurs to me sometimes if I see a really big guy who looks kind of scary. I wonder: what is it like to have people make up their minds about you before you even open your mouth and share anything about the essence of who you are? I suppose I’ve thought about it in connection to myself too. It’s easy to judge “illegal immigrant” without knowing the whole person. But, for the most part, I’ve had it pretty easy. I don’t have anything that would make someone stop and stare on the street. But I’ve often wondered what that feels like.
The thought was particularly acute as I watched the HBO documentary, Life According to Sam. The “Sam” of the title is a teenage kid with an extremely rare condition called “progeria.” It causes premature aging and abnormal development and is caused by a single spontaneous (non-hereditary) mutation of one single gene. It is believed that there are currently only 200 people alive with the condition. Talk about a cruel cosmic joke. Life expectancy is 13 years.
Sam is 13 when we meet him. The documentary is expertly crafted, helping you see him as the unique individual that he is. Mental function is not at all affected by progeria, so it’s easy to fall in love with his mind and the positive way he faces the world. In the first scenes, he’s building with his Legos.
What makes Sam’s story all the more amazing are his parents, Dr. Leslie Gordon and Dr. Scott Berns, who founded the Progeria Research Foundation when Sam was diagnosed with the disease at 22 months. Their story is at once uniquely intimate but also that of the universal struggles of parents with sick kids. They are a remarkable example of turning personal tragedy into an inspiration to act. Their foundation discovered the gene error that causes progeria in only four years. The documentary tracks the progress of a drug trial for the first-ever potential treatment for kids with the disease. The story is told so well it feels like a race against the clock, not the story of medical research.
At the end, we’re left with Sam who, at 17 years old, is beating the odds against his disease so far. He wants to be a geneticist. He gets to play snare drum in his high school band although the administration is clearly jittery about him hurting himself. He talks about his future as though it is a certainty.
And then there are his parents. What is it like to know your kid has a death sentence? They handle it with grace and positivity but also with realism. There is one scene where the dad takes the son to a concert and they get in to meet the band backstage. The father talks about how he’d give up anything just to have his son be well. It is a moment so raw in its humanity that it just grabs you. You can see in his eyes the wish of every parent, everywhere: Please, just let my child be okay. It is the fundamental yearning.
So, yes, Sam and his family made me think a lot about what it means to be human and enjoy our time here. His life doesn’t seem any less precious just because it is probably destined to be short. It’s limited, yes. But, then, isn’t it for all of us? Sam’s dad says, at one point, that he lives every day with Sam as if it could be the last. I’m grateful for the reminder.
Catch Life According to Sam on HBO and HBO Go: Click here to read more (and to see a picture of Sam’s beautiful smile).