Flexing the heart muscle

August 27, 2015

Sam Berns and his parents.

“All in all I don’t waste energy feeling bad for myself, I surround myself with people that I want to be with, and I keep moving forward.” ~Sam Berns

I wasn’t even one minute into the HBO documentary, Life According to Sam, when my eyes teared up.  I wasn’t sure if I could stand to watch it.

Sam was a teenager who has that premature aging disease, progeria. Kids age so quickly that they die in their early teens from the same diseases that strike the elderly.  These kids? They’re brave.

There is no cure.

As I expected, the film was heartbreaking, even as it was inspirational.

Sam, the ostensible subject of the film, was born to two doctors. One began a research foundation that developed the very first treatment for progeria–and quite quickly.

But not fast enough for Sam. He died in January 2014 at the age of 17.

The film shows us that Sam was bright and precocious.   He loved Legos. And playing drums. He wanted to go to MIT. He planned to be a geneticist.

Like other teens, he was concerned with music and sports. But death was also a subject he was familiar with, as he watched other kids with progeria die, one by one. His friends.  All mature beyond their years. All charming and beautiful.

The camera doesn’t stint –it shows us the pain and the love of these beautiful parents. To watch the faces of the parents of kids with progeria is to see the face of God–the love is palpable.

I sobbed throughout the film and that was ok with me.

Like any other muscle, the heart muscle gets strong when it’s exercised, and in this case, I don’t mean through cardio. I mean through watching and experiencing, really experiencing things that touch us. Allowing ourselves to feel them.

A look at my social media feeds (and yours, probably) reveals how little compassion there is in some circles. There’s so much judgment, a rush to judgment and far less willingness to seek understanding than I wish I saw. Too many people make nasty comments about things they don’t understand. It saddens me to see this among my social media crowd and in the world. Yes, it’s easier to tar people with a broad brush than to dig deep and seek compassion.

But a well-lived life requires compassion, in my opinion.

It’s by flexing our compassion muscle that we strengthen our hearts enough to last our entire lives. Because our hearts will be broken over and over and we will be required to get up and walk on.

I believe that to fully live, we must feel, we must cry, we must experience our compassion.

Sam did that for me the other night.

And I’ll be making a donation to the foundation.

Feel like it’s time to flex your compassion muscle?

You can find information about the film, Life According to Sam, HERE.

Read about Sam’s death HERE.

Learn more about progeria and donate HERE.

This post is dedicated to my mother, who died in 1999 but would have been 90 years old today. Pretty much everyone who knew her remarked on her kindness and consideration. She set the bar high and I fall short many times. But I think of her and try again. Thank you, Mom, for the gift of compassion. I miss you big-time.


17 comments on “Flexing the heart muscle
  1. You’re so right. We will have our hearts broken and still be required to get up and go on. I’ve seen this doc too. Heartbreaking. Now it’s time to break the bank. Let’s find a cure!

  2. Yes ,let’s! Glad you have seen the film.

  3. Oh, Carol, truth be told, I just didn’t watch this because I knew my heart would be breaking. But you are so right. We must continue to let our compassion shine, especially in light of all the hatred, judgment, and ugliness that others are so willing to share. A beautiful post.

  4. Just your description of the film and of Sam and his parents was enough to cause an ache in my heart. I don’t think I can bear to watch the film. It has been one of those weeks for me: the death of a friend (my age) who has endured years of pain and two other friends who lost beloved dogs this week. This capacity for empathy is one of our toughest traits to endure, but is also the hallmark of our humanity.

  5. It is important that we feel deeply. Sam’s story fills us all with hope, joy, and sorrow.

  6. Heartbreaking. If I had HBO, I’d be watching and crying. Such a story sure puts my challenges and complaints in perspective. Thank you for sharing. God bless Sam’s family for sharing, too.

  7. Janie Emaus says:

    Thanks for bringing this film to my attention. It looks heartbreaking, but uplifting at the same time.

  8. Mary says:

    My heart hurts just reading your post. Thank you for making us aware of Sam and the documentary. I can’t begin to imagine the pain Sam’s parents feel or all the others who have children who are suffering with medical problems we don’t understand.

  9. Helene Cohen Bludman says:

    I have seen segments on TV about Sam and other progeria victims. It is truly heartbreaking and I have so much sympathy for the families affected by it. I sincerely hope medical research will find a cure soon.

  10. That movie definitely gave my heart a workout too. I have a special needs grandson who isn’t expected to live much past his teens, so these stories are extra inspirational and equally heartbreaking for our family.

  11. Nina Gaby says:

    So glad you posted this or I’d never have known about the film. I started crying at the first line of your blog and look forward to trashing a whole box of Kleenex as soon as I have time to watch the whole thing. Thanks..

  12. When I see stories like this, it pulls me up sharp about the stupid things I worry about. What a strong family they must have been to face such heartbreak together. How awful to lose your child.

    And yes – there is way too much judgement in this world. Acceptance of differences is not much to ask really. It is so much easier to be kind and it feels much better inside than being mean or lacking in compassion. Thanks for a thought provoking post.

  13. I couldn’t agree more that we should flex our heart muscle! Sometimes it seems like crying over someone we don’t even know would be pointless or silly, but it’s good to have that kind of compassion and to care about others.

    Thanks so much for sharing this on Inspire Me Monday!! I’m including this as one of my favorites from the link-up because I love it so much!

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