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.