1825 A.D.

“O me! O life! Of the questions of these recurring, of the endless trains of the faithless, of cities filled with the foolish; what good amid these, O me, O life? Answer. That you are here, that life exists, and identity; that the powerful play goes on and you may contribute a verse. That the powerful play goes on and you may contribute a verse."

Today is the five-year anniversary of my diagnosis. I hadn’t planned to expend much energy on that fact, much less acknowledge it here. But some intense emotions have found their way to the surface this past week, and I now sit here in awe. Statistically, I should be dead. I shouldn’t even be eating or talking anymore. And how can it be I have two beautiful daughters, a rock star wife, and an incredible network of family and friends to love and support us? Despite the considerable decay of my body, today I am overwhelmed with humility and joy.

Our journey has been shocking, frustrating, beautiful, daunting, frantic, intimidating, magnificent, majestic, mind-blowing, terrifying, and wonderful. It has also been quite literally breathtaking, since my breathing capacity is less than half of what it used to be. My arms and legs are nearly useless, although my legs can still bear weight, and my right hand can drive my wheelchair. I need help with just about everything, and can rarely be alone. Lately I have struggled to make this choice, but today I choose to celebrate and rejoice in the myriad ups and downs of this journey. I am fortunate for all of it.

As I’ve mentioned before, to deal with the initial shock five years ago, I would often play a little mental game. I would pretend that on August 30, 2004, I was killed in a car accident, and I had been allowed to come back with ALS. Instead of counting down the number of days I had left, I would count up, and every day of my life from then on would be a bonus.

I am at 1825 and still going. The powerful play still goes on. And I still have a verse to contribute.

Legacy B-sides: Part 2

Mark and I talk tools, technology, mind reading, anal-retentive spreadsheets, the relative cakewalk of my ALS up to that point (early 2007, just over two years A.D.), and the single most important concept in the entire universe.

Click here.

Legacy B-sides: Part 1

What do musicians do when they run out of fresh material or their party-rich lifestyle has drained them of all creativity? They dig through their closet, find a bunch of stuff they once deemed unworthy, and package it as a desperate collection of “unreleased” or “B-side” tracks. Full disclosure: I am about to attempt the same pathetic stunt on you. My own degenerate, ALS-fueled lifestyle has, dare I hope temporarily, sucked the words from the heretofore verbosity of my writing.

I was recently digging through the closet on our computer and I came across some audio recordings from my Legacy Project. My friend Mark interviewed me a few years ago as I was scrambling to create a short video to open at a fundraiser screening for the ALS documentary So Much So Fast (see Matinee in May). I used parts of the interview as narration for what turned into a sort of summary video of the project, cunningly titled Legacy (see Legacy).

So to continue putting my voice “out there” per the original intent of this blog, I literally offer you my voice with the attached sound file. It’s a fairly rough and unedited sampling of my conversation with Mark (nothing too lapidary as he might say) and it will certainly reestablish some verbosity to my, um, verboseness. See what I mean? The words, they just don’t come easily these days.

Anyway, I have tons more where this came from. I might throw another sampling out here periodically as I struggle to write. Let me know what you think, or when you’ve had enough.

Click here.