If 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." xoxo, 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.” Amen sister! Get Updates (It's Free)
“If you shut up truth, and bury it underground, it will but grow.” Emile Zola
Do you know that feeling of walking through life trying to function and look okay, but on the inside being a complete mess? That was me during most of 2009.
Of course, a select few knew my secret but, at that point, I wasn’t ready to publish my truth to the world. I was just trying to get through each day, if not each minute, the best I could.
That February, a breast cancer diagnosis had gone off like a bomb blast in my life. I lost body parts, but could cover up the physical and emotional damage with clothes and an “I’m fine.” It was a lie and I told it because I thought acting strong was how to “move on.”
No such luck. Every time I stepped out of the shower, my fifteen inch hip to hip scar, missing nipple and asymmetrical, scarred breasts screamed “DAMAGED” at me. Emotionally, I was angry, lonely, fatigued and teetering on depression.
That summer we were invited to friends’ house for dinner and I finally confessed to my husband that I was exhausted emotionally from telling people I was fine when I wasn’t. I felt like I was lying all the time and I just didn’t want to do it anymore.
His answer, “Tell the truth.”
It was a radical idea and, when the inevitable question came up, I took his advice and was surprised by the empathy and compassion I received. That was the moment I realized burying the truth didn’t make me strong. Being strong required telling the truth and taking small, concrete steps to honestly live it:
Show Up to be Supported: No one knocked on my door to offer support during my early days of covering up and acting strong. Support didn’t come until I admitted I needed it and showed up to get it.
Tell Your Story: When I started telling my story I felt heard. Being heard made me feel validated and validation helped me heal. There was no shortcut to emotional healing that let me get away with not telling the truth.
Practice Gratitude: All I had to do was say, “thank you.” Letting others know how much I appreciated them, even when it made me feel vulnerable, brought more goodness into my life.
Give Back: The first time I shared with another cancer survivor I was shocked to realize my cancer experience was actually worth something. Putting my suffering to work in service to others was, and still is, a win-win.
Say “Yes” to Yourself: Before cancer I was extremely risk-adverse. When faced with something new, I’d come up with a million reasons to say “no.” After cancer, I honestly faced my fears and asked just one question, “Why not?” The answer lets me know whether or not to take the leap.
Move Your Body: Before cancer I wasn’t athletic. I’m still not athletic, but I’ve discovered yoga and walking. Getting active gave me back some control over my body, with each yoga session bringing a stronger connection between body, mind and self.
Practice Mindfulness: Mindfulness brings me into the present without judgment. When I focus on the now, rather than replaying the past or worrying about the future, I have clarity and much less drama.
Make Time to Play: There is no falseness in play. When I play, I am joyfully living in the moment and everything I am is true.
Take Every Opportunity to Laugh: Laughter is the crystal clear sound of joy. You can’t laugh and not feel joy and, at least for that moment, joy is your truth. Try it!
Cultivate a Sense of Wonder: The world is a wondrous place. When I open my eyes to it, I let myself truly believe in possibilities.
Back in the day, I thought insisting I was fine and hiding the truth of life with breast cancer made it so. I was completely wrong.
Emotional healing is impossible without truth-telling.
If you’re struggling, how do you show up for yourself in honesty and truthfulness? I’d love to hear from you; please leave me a comment below.
If you found this post useful, please share it with your friends on Facebook, Twitter or Pinterest.