Life has been anything but boring. Although life has not unfolded quite the way I dreamed or expected many years ago; the journey has still been an incredible adventure, one that I wouldn’t change or trade. Although I can’t even scratch the surface of the last ten years without writing more words than anyone in their right mind would want to read, there is one significant event that has led to a thousand others that I’m thankful for and strangely fond of.
I recently passed the ten-year mark since being diagnosed with Friedreichs Ataxia (FA). I know the prognosis. Spend a few seconds on Google and you’ll know too. However, it’s not the prognosis I want to write about. Instead, I prefer to talk about the life it has helped me create.
Most recently, I was able to travel to Australia for the first time and be a part of a few significant events and progress in the world of research, awareness and fundraising for this condition, for which there is yet to be a treatment or cure. In fact, it was while on this trip that I realized 10 years has passed by. I had no idea that my simple search on Google the night I was diagnosed would lead to a full, interesting, crazy, and sometimes dangerous life.
Two weeks after my diagnosis, a few friends and I packed into Mike Mellott’s Honda Pilot for a 5-hour road trip to participate in a 10k that I stumbled upon during that initial Google search. A week or two later, I met a fellow FA’er, Kyle Bryant, who lived across town from me. I went into this diagnosis much like my father did with his diagnosis of cancer: “Ok, what’s next?”
In June 2007, I committed my involvement and participation in helping with Kyle’s second big ride, “Ride Ataxia II,” a 650-mile trek from Sacramento, CA to Las Vegas, NV that took place a year later. In July 2007 I realized I needed a bike. Those same friends in Mike’s Honda also came along to Vegas nine months later. Most of my friends and acquaintances know that the bicycle and a friendship with the nut case that is Kyle Bryant has been the catalyst for many of my adventures over the last 10 years.
However, many other friendships over the years have kept me moving, kept me dreaming, and help me keep a healthy perspective on life. I can’t name them all, but there are a few significant people just in the FAmily that have made an impact on my journey with FA.
I had the significant pleasure of being an Olympic Torchbearer in the 2008 Olympic Torch Relay due to my friendship with then 12-year old Ashley Hartigan. Bart Rupel kept me company during some steep hills on our way to Vegas. Spinner has encouraged a smile and positive attitude no matter what we’re up against. Sometimes I dislike his dad, but I’m thankful that then 16-year-old Sam Bridgeman reluctantly journeyed to Vegas with us. Thanks, Tom & Amy! The Johnsons, Uncle Steve, Mike & Diane Bryant, Tom & Dede, Paul & Suzanne, Louise Corben, Martin Delatycki, Jen Farmer, Ron Bartek, Lucas Van Sickle, Noah Coughlin, Tom Hamilton, Kevin Schlanser, Zack Bennett, Nate Adams, and my parents all remind me that there is no distance too great to bring a stop to our climb.
From my first 10k in Bakersfield, CA to several Team De:terminence 12-person 200-mile relays; from Ride Ataxia II to the completion of Race Across America with TeamFARA; from talking to myself to co-hosting the Two Disabled Dudes Podcast; from dreaming of Hollywood as a kid to appearing on the big screen with The Ataxian; from California to Florida, Rhode Island to Australia…the journey has been exciting and the devotion of many far outweighs the diagnosis, passion outweighs the prognosis, and hope outweighs the hardships.