Telethon

It seems so long ago that we filmed that piece for last year’s telethon. So much has happened. We’ve continued to get incredible support from friends, family, and the MDA. On the other hand, Jeff’s disease has continued to progress. He can’t speak anymore, but he can write and he asked me to share this with you.

As Kathryn said, so much has happened it would be impossible to sum up the year, so I’ll just share one my favorite stories from the last couple months.

Kathryn and I were shopping for dog food and chew toys for our yellow lab, Moose. I was sitting in my wheelchair with head gear on admiring a wide selection of birdfeeders, when I noticed the cutest little girl standing with her mother in the checkout line. She had obviously been staring at me for awhile. Finally her curiosity got the best of her. She let go of her mother’s hand, marched over to me, looked me up and down, stared me straight in the eye and said “what the hell happened to you?”

I’ve been asked many times what its like to have ALS. My usual answer is that it’s a lot like flying to Singapore in coach, except you never get to leave your seat and the plane never lands.

But really, how can I describe the absurd reality of being able to feel your arms and legs and not be able to move them. The heartbreak of not being able to speak, to be fed through a tube, to rely on a machine to breath for you. I simply can’t describe what it's like to have ALS, but I can describe in perfect detail something else, something I think about every day…what it would feel like to be cured of ALS.

It starts one morning, my finger twitches. That’s odd, I think, that finger hasn’t moved in a year. There it goes again, and then a toe joins in, and this one doesn’t just twitch it positively WAGGLES! The thrill is almost too much to bear. Before long my legs are dancing under the sheets and my limp useless arms are raised like a long distance runner crossing the finish line. And then I do something I’ve dreamt about for two long years. Slowly, carefully, I slip the mask from my face, roll over and gather my wife in my arms, whisper her name and say don’t worry, love, it’s over, there’s nothing to be scared of anymore.

There are 30,000 people with ALS across the country, and 30,000 dreams of what it would feel like to be cured. So remember, when you pick up the phone and pledge to the MDA, you’re doing a lot more than giving to a good cause, you’re creating hope and donating dreams.

Kathryn and I want to thank everyone at the MDA for supporting us, and all of you at home for supporting them.