My Mom Died Of ALS. Here's What The Ice Bucket Challenge Means To Me
In 2012, I lost my sweet, beautiful, amazingly kind mother to amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease). By the time my mother passed, all she could voluntarily move was her left arm. Her breathing was labored. Swallowing was almost impossible. She often choked and had to have a tube stuck down her esophagus in an unpleasant and almost violent way to save her life. She had a bed pan.
She had signed paperwork that said if she choked to death, stopped being able to breathe or unable to swallow, she did not want to be resuscitated or put on life support equipment. She wanted to die. She was over the struggle. Although she was kind and loving, she was sick and tired of not being able to hold her new grandbaby, have a glass of wine or walk across the room.
It was surprising to me how few people knew what ALS was. It was also surprising to me how many people came up to me after class — where I often shared her struggles and triumphs in attempt to encourage others to love their lives even with all of the bumps and bruises — so many people came up to me and said, "I’ve lost a loved one to that disease too. And it sucks. Thank you for sharing."
So when this #icebucketchallenge started sweeping social media networks, I was reserved in my response. One of my high school friends was the first to join in. I love this woman, but her participation added to my skepticism, as we have wildly different approaches to life (she hates yoga, for example). So I sat back and watched.
Within four days, I knew that I had to participate. I was waiting for someone to tag me, but no one did. And so, one afternoon driving around in my car, I said to myself, I’m doing it. I don’t care if no one tags me. This thing will be over soon and I won't be happy if I don't participate.
Then I went to pick my son up from school. He got in the car and said, "I was challenged to do the Ice Bucket Challenge."
I said, "Great! I want to do it too." He looked at me surprised. "For Daisy," I said. His nickname for my mom.
He reached out and we fist bumped (he’s 11). "For Daisy," he agreed.
The truth is, more people need to know about what can happen in the path of this disease.
The truth is, we may never find a cure, but we have to try.
The truth is, I'm grateful this silly viral effort is raising so much awareness and so many funds to help wage a war against something that is so treacherous and so frightening and so fucking full of horrendous torture — ALS.
But there’s more.
Besides dumping a bucket of ice on our heads with our neighbors, family, friends and celebrities, besides pledging and hopefully following through with funds to the foundation, which will hopefully invest those resources wisely, there's something more we can do. Something my mom taught me. Something strong and graceful and so not easy.
We can approach each day as if it were our last. We can reach out to our loved ones, even if we don’t see eye to eye with them, even if they grind our every last nerve, even if sometimes they make us want to scream in frustration — we can reach out to them and tell them that we love them. Exactly the way they are. For exactly who they are. We can tell them we see the beauty in them, even if they can’t see it in themselves.
Here's the next thing we can do. And this one is another level up — it isn’t easy. We can look in the mirror and say these words: I love you. And if it’s hard, if you look away, do it again. Repeat. Repeat. Repeat. Repeat until you feel it.
Because one of the only ways to rid this world of diseases like cancer and ALS and lupus and countless others, besides awareness and support and funds, is learning to love. Love ourselves. Love others. Love and accept and celebrate and appreciate each breath. Each wiggle of each finger and each toe. Don’t hold back. Don’t put parameters or expectations on things. Just love. Love your life. Love your love handles. Love your siblings. And learn to be yourself fearlessly, in the words of Anita Moorjani, who survived cancer via this mechanism.
This carbon-based life is fleeting. And it’s important. We're all connected and in this together. So please. Please. Please. Choose to love your life. Ice buckets and all.