A Good Night With ALS
Last Thursday at The Hollywood Roosevelt Hotel, the ALS Association gave my wife and I an award for being inspirational people who fight ALS daily. This was our acceptance speech.
Ladies and gentlemen, generous supporters of the ALS Association, thank you and thanks to Ben Garant for presenting us with this award, and thanks to Mark Amin, David Higgins and Sobini Films for producing “Sexy Evil Genius” and “Jujitsu-ing Reality”. It’s a real honor and blessing for us to be here tonight to share this special moment with you. We would like to dedicate this award to my Mom, Tammy, who couldn’t be here tonight because of her own health reasons.
First of all, for the record, ALS totally fucking sucks. Just wanted to get that out of the way.
To put it in perspective, I look at myself in “Jujitsu-ing Reality”, which was shot only about two and a half years ago, and I think, look at that able-bodied guy. Sure, I was head-to-toe paralyzed, couldn’t speak or breathe without a machine, but I could still move my neck slightly, enough to use an on-screen keyboard. I wasn’t slack-jawed and drooling. My right eyelid wasn’t drooping, halfway closed. That is the nature of ALS. Just when you get comfortable with your level of disability, no matter how extreme, there’s always another muscle to lose.
First, you can’t walk, then move your arms, hands and neck, then you can’t eat, you can’t move your face or smile or laugh, then you can’t breathe and last to go is your ability to speak. All the while that your ability to interact with the world diminishes, your sense of wanting to reach out into it increases because your mind remains active and alert. It’s like being buried alive in your own body.
Sounds frustrating? It can be. Not just for you, but for the small army of people, saints and angels, it takes to keep you going.
So, why live? Easy. Life is beautiful. Every day is a chance to have fun and be creative. I get to see my four year old twin monkeys, er, I mean, boys, grow up, learn amazing stuff, and use me like a jungle gym. I get to see my wife smile, do her silly dances and wrestle with Rocky & Roman, our sons. I get to have my hands and feet licked by our dog, Penelope. The other day, I was in our backyard and I saw a hummingbird flying around our lemon tree. You just can’t enjoy life like that when you’re dead.
I’m just trying to paint a picture for you of what having ALS is like and why it is so important for you to support the ALS Association. Let’s find a cure for this horrible disease and help families afflicted by it.
It might be too late for a cure for me, I hope it’s not, but if it is, I would love for my epitaph to be, “He was the last person to die from ALS.”
Thank you. Thanks to my wife, Annabel, for reading this speech. And thanks to the ALS Association for this award.