Once upon a time, this was me.
She still lives, but hers is a suffocating, frightened existence inside the shell ALS built around her.
Sitting in my wheelchair, too weak to lift a teacup, I make a resolution: to do anything and everything to be the girl who dances with fire once again. Now, I am on a rescue mission to get her back. I don’t have much time. However, I have hope because I am my own knight. I will keep testing and funding new research until one day…
I am sitting with a new friend from yoga class at a sidewalk cafe. This place is humming with voices, one of them mine. I meant to keep the conversation light, but I can’t resist. After all, it’s my anniversary.
I say, “Would you believe I used to have ALS?”
She’ll gasp, thinking how she never would have known, remembering my perfect sun salutation in yoga class; my recovery was so remarkably complete. I smile. It’s been ten years, and I still feel a thrill in my chest whenever I even think, “I had ALS.” It’s my very own happy ending.
“The Ice Bucket disease?” she asks, then flaps her hands as she reins in her shock, continuing, “I mean, the awful one they cured with the ice buckets? Oh my God! How long did you have it? You must have been so scared!”
I don’t answer fully. The truth is too overwhelming for most people. They are uneasy hearing that for those eight years, I felt like I was aging at cyber speed while watching the end rushing toward me. Then, there was the cure, I’d go on to explain; that was like being snagged at the ankle and dragged back through a tunnel of time. The universe flipped, I’d tell them, demonstrating with excited hands, and I was born back into the world, hardly worse for the wear, learning to exist in a healthy human body again.
After I share all this, people are left speechless (like I was for six years), and the conversation never quite recovers, so I keep my reply short and easy: “Eight years of Hell.”
She shudders at the horror, quickly shrugging off thoughts of suffering in a way I envy. In mere seconds, she shuts it out and steer us back to clearer waters. I don’t mind. I’ve said my piece.
It’s time to move on.
“There will be other lives.
There will be other lives for brand-new suitcases transporting you to strange new people in strange new lands.
And there will be other lives for unpaid debts, for one-night stands, for Prague and Paris, for painful shoes with pointy toes, for indecision and revisions.
And there will be other lives for fathers walking daughters down aisles.
And there will be other lives for sweet babies with skin like milk.
And there will be other lives for a man you don’t recognize, for a face in a mirror that is no longer yours, for the funerals of intimates, for shrinking, for teeth that fall out, for hair on your chin, for forgetting everything. Everything.
Oh, there are so many lives. How we wish we could live them concurrently instead of one by one by one. We could select the best pieces of each, stringing them together like a strand of pearls. But that’s not how it works. A human’s life is a beautiful mess.”