I’m honored to be writing y’all this month for Augie’s Quest. I vividly remember the first time I heard about Augie. It was a morning in late 2013 and I was getting ready for work. From the bathroom I could hear my wife crying. She called for me to come watch the Today Show where they were doing a story on Augie. I thought to myself, “that’s one resilient dude”, and I went on with my day.
Little did I know that just six months later, at the age of 36, I would be diagnosed with the same disease. I was the picture of health (ok besides my affinity for craft beer), ran my own music technology company, married to my high school sweetheart, and had two young daughters whom I adored. Now facing a diagnosis with an eighteen month life expectancy my doctor told me to get my affairs in order, like anyone knows what that even really means?
Almost four years later I sit here typing to you with my eyes, completely paralyzed while my nurse pours my lunch through a tube in my stomach. Even as I type that it sounds surreal. Despite my condition I’m busier than I’ve ever been. I’ve started a second career as a writer, both to raise awareness for ALS through my blog and for the Huffington Post, and as a fiction writer. I’m developing technology to enable people with disabilities more freedom, and raising two incredible kids.
ALS has taken a lot from me, too much to even begin to list. But it’s also given me a lot to live for. I look forward to watching my girls go off to college, to celebrate my 25th wedding anniversary, and to see the day where ALS isn’t a devastating terminal illness. I know that I’ll be around to see that day and I’ll spend every minute leading up to it trying to make the world a better place.
I don’t believe everything happens for a reason, things just happen and how you respond creates meaning. I do know that seeing Augie on TV that day left a profound impact on me. It showed me how perseverance, determination, and hope can prevail over whatever you’re facing. It also showed me that leading by example is the most important thing I could do, and I haven’t looked back since.