Sunday, August 30, 2009

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.


Anonymous said...

Beautiful as always Scott. It always saddens me to think that the ordeal I am reading of is yours, but so happy to see that you have gotten to experience the things that bring us the most joy. You definitely have been blessed with a rock star wife and there is no greater gift than those girls. You truly are an inspiration to all of us in accomplishing all that you have in these 5 years! You are all in my prayers. -Heather H

Anonymous said...

Congratulations, Scott!
A huge milestone for all pals.
You are all in my prayers, too, and so is the procurement of a diaphragm pacer for Mr.1825 and counting up.


edward said...

love your perspective. i am 9 years into the journey since i was dx. love your analogy about dying in a car accident and coming back with als. i agree that every day is a gift.thanks for writing.
ed dobson

Anonymous said...

Scott, I just came across your blog randomly looking for the Walt Whitman quote you post here. I am a 37 year old woman recovering from a brain tumor. I never quite thought of it as "counting up" but the feeling of being a fortunate witness to every new moment is the same. Thanks for this beautiful blog. I love it. Also if you ever want a receipt for the best "big job" bars a person could eat every day, just let me know and I'll email it to you. Best wishes to you! KC

Anonymous said...

Wow, what an incredible blog. I am a college student who came across this blog while searching for the Walt Whitman quote and was quickly transfixed by your humorous and passionate writing. You have an amazing ability to engage with readers and share your heart through writing. This blog reminds us that life is short and that we ought to enjoy to the fullest each and every day. What an inspiration. Thank you.