Thursday, May 15, 2008


In this blog you will meet the faces of an ALS community. These communities are everywhere, literally all over the world. This one happens to be in the San Francisco Bay Area of California. This is a love story…dedicated to a man who lived, laughed and loved in a community. Now each of his friends carry his story, because he can no longer tell it for himself. It takes a village to care for an ALS patient. This is the story of our village. It is my privilege to share this collection of thoughts. Please use them as a starting point for finding your own best path.

Life is a series of events handed to you. It’s not the event itself that’s important…it’s how you handle the event. My dad explained to me early on that there are two ways to handle the events in your life:
1) Stay in bed, pull the covers up over your head, don’t come out….ever.
2) Get out of bed, dry your eyes, put one foot in front of the other and do the best you can.

I now believe there is a third option:
3) Don’t even bother crawling into bed, give the event a “raspberry”, and then run and have fun! My new favorite quote is from Matt Frewer. "Never knock on Death's door: ring the bell and run away! Death really hates that!"

So…once we got our ALS diagnosis, we had two rules that we lived by. We weren’t perfect, but we did a really good job!


Rule #2: Get mad at/fight the disease, not each other! ALS will test and bring out what's great and maybe not so great in your relationship with those you love. Neither of you caused the ALS to happen and neither of you can change the diagnosis. You have a choice to make together... You can work together to make the best of a shitty hand of cards dealt to you. OR… you can spend your time fighting. It really is a choice.

You are incredibly brave….please don't ever forget that! But…I have a question? How do you want to be able to coach the next ALS family that's coming behind you? Now is your time to decide how you're going to write your ALS story....together! The rest is still unwritten.

It is only now that I'm realizing how fortunate I was/am and how much Bill and I grew, as individuals and as a couple once ALS was introduced into our relationship. It is my fondest prayer that you will find new strength in yourselves and each other and that once your PALS is gone, you'll look back fondly on this time and be glad that you got it together, together!

No comments: