This is What the ALS Ice Bucket Challenge is All About

download22If you’re on Facebook even a little bit, you’ve seen video after video of people dumping ice buckets over their heads.

The ALS ice bucket challenge is the internet craze of the summer. The rules are a bit murky, but it appears that once challenged, you have 24 hours to donate to ALS and/or pour ice water over your head. (That’s the part I’m not clear on.) Before the chilling moment, which is recorded and posted on Facebook, you challenge three other people (which is how the challenge keeps going and going and going.)

Earlier this month we were on vacation, out of the internet loop and ice bucket challenge clueless. Imagine my surprise when I got home, hopped on Facebook and connected the challenge to the book I just finished reading, Until I Say Good-Bye, My Year of Living with Joy.

Author Susan Spencer-Wendel wrote most of her New York Times bestselling memoir on her iPhone, tapping out each letter with her right thumb. At age 44, she was diagnosed with ALS (more commonly known as Lou Gehrig’s disease.) As her muscles slowly withered away, she wrote:

not about illness and despair, but a record of my final wonderful year. A gift to my children so they would understand who I was and learn the way to live after tragedy: With joy. And without fear. If Lou Gehrig could feel lucky, then so could I. So should I.

Living with joy and without fear isn’t something I’m especially good at. I’m a worrier. I’m careful. I know what it’s like to feel like a sick person. I was drawn to Susan’s memoir because I couldn’t imagine how someone chooses joy and fearlessness in the face of an inevitable, torturous death. I wanted her to convince me it was possible.

And she did.

Despite her worsening health, Susan committed to creating life-long memories for herself and her loved ones. She took special trips with each of her three children, husband, sister and best friend since middle school. She traveled to the the Yukon Territory to see the Aurora Borealis (dog-sledding included.) She made a pilgrimage to Cyprus to meet the family she never knew (Susan was adopted and never met her deceased, biological father.) She joined her husband on a trip to Budapest, where they spent the early years of their marriage. She swam with dolphins.

As a mother and wife, Susan dedicated herself to providing her family with positive, loving memories to sustain them after she was gone. But, I think it’s important to note she took care of herself too and focused on living with joy. While each memory made was a gift to a loved one, it was also a moment to hold dear when the inevitable happened and she became a healthy mind trapped in a lifeless body.

This is a heartbreaking, exquisite, life-affirming memoir. As I read, I was constantly reminded that life is best celebrated in the here and now, mindfully and with awareness. That’s where loves lives and where joy finds us.

If Susan Spencer-Wendel “can feel lucky, then so could I. So should I.”

Survival > Existence,

Debbie

PS: I have yet to be ice bucket challenged, and for that I am very grateful. I hate cold. In fact, I’m allergic to it and break out in hives. Really, I’m not even kidding. So, I’ve already donated to ALS and there will be no video, ever, of me pouring an ice bucket over my head. If you want to donate, you can do so here. If you want to check out Susan’s book, find it here. If you’ve done the ice bucket challenge, I’d love to see it!

PPS: I also learned after reading Susan’s book that she died from ALS just a few months ago, on June 4, 2014, at age 47. I love her quote in the New York Times article, “As you know, life ain’t perfect.”

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