The Ice Bucket Challenge: Remembering My Mother

I am impressed with the viral nature of the “Ice Bucket Challenge,” but I’m wondering if people really understand its purpose above and beyond the fun of calling out their friends (and enemies). This challenge is intended to raise money for ALS aka Lou Gehrig’s Disease….but to me ALS means “my mom’s disease.” So, let me take you on a journey through ALS so you really know what it feels like in the hopes that you donate rather than, or in addition to, take the “icy way” out of the challenge. I challenge you to read this without crying…and then I call you out to raise awareness on what this craze is really all about.

A Journey In Listening

We were dependent on your loving words,
Your wise advice,
Your compassionate understanding.
We told you everything.
You told us everything.
We were best friends.
We spoke nearly every day,
Dependent on the ability to talk about our lives,
And to hear about yours.
Since we were often apart, our voices connected us.
You told us that we were loved; we were beautiful,
Wise, creative, wonderful.
Your voice reassured us.
Your voice warned us.
Your voice taught us.
Your voice loved us.

Then your voice left us,
And we let go.
Instead we became dependent on your written word.
You wrote us notes, thanking us, guiding us.
You said “I LOVE YOU!” in big, bold letters.

Then, your writing left us,
And we let go.
Instead we became dependent on the typed word.
You told us how to care for you, what you needed,
and what you were feeling.
You told us that you loved us.

Then the typing left us,
And we let go.
Instead we became dependent on your thumbs.
Your thumbs told us “Yes” and “No.”
Your thumbs said, “Two Thumbs Up!” and continued to encourage us,
Even though you couldn't eat, or walk, or move, or talk.
They guided us like hitchhikers through the course of caring for you.

Then your thumbs left us,
And we let go.
Instead we became dependent on your eyes.
You looked at us and let us know you were still there.
You looked at us and told us silently with your eyes
That you loved us,
That you appreciated us,
That you knew we loved you too.
Your spirit, your presence, your essence, your love,
All beamed from your eyes,
With no words written or said, no gestures.
Just the light of your eyes spoke to us,
Of life, of love, of compassion, of acceptance.

Then your eyes left us.
You stared past us and through us,
Into some other world beyond us.
We struggled with letting go.
We became dependent on your breath, your heartbeat.
We placed our hands on your chest so you could feel us,
And we could feel you;
Physical touch.

Now that has left us, too.
No more voice;
No more notes;
No more thumbs;
No more eyes;
No more heartbeat;
No more breath;
No more touch;

And yet, you remain;
You have not left us.
We hear you.
We feel you.
We know you.
We love you.

You and God speak the same language,
And we are listening.

—Eve Eschner Hogan, March 20, 2005, Vernal Equinox.