In 2019, when I set a goal to be the first person with ALS to do a marathon in all 50 states, I figured the disease progression would be the only thing stopping me. I never imagined a global pandemic would cancel all the races!
Let me back up and introduce myself…
I was diagnosed with ALS in 2014 at the age of 33. I went from the strongest I’d ever been, completing a half Ironman triathlon, to walking with a cane in just eight months.
People often ask what I felt at that moment when I heard ‘you have ALS,’ but I can’t separate it from the 19 months leading up to it. What started innocently enough with an index finger that wouldn’t extend while swimming laps morphed into hamstring tightness and slowing training times, and eventually left me sprawled out in the middle of an intersection in downtown DC, unable to get up. One year and six neurologists later, I finally knew what was wrong with me…and that I had no more time to waste.
We bought a recumbent trike so I could do one last sprint triathlon. (“Hell, we can cash in my 401k,” I thought). My best friend and I came in last by almost an hour, but it didn’t matter because more than 100 people stayed to cheer us in. That’s when I realized I could inspire people to appreciate what their bodies could do. I challenged my friends to take on a race that represented a challenge to them, and together with my foundation, we have raised $500,000 for ALS research.
Meanwhile, I kept riding my trike because I loved feeling the strength of my muscles. It reminded me I was still alive. Eventually, I did a half marathon, then a marathon. I added swimming, then Pilates, then respiratory muscle training.
When I reached my fifth anniversary with ALS – a milestone that only 20% of people reach – I wanted to set a big goal, to shake off the fear and embrace hope again. The biggest goal I could think of was a marathon in all 50 states, especially since then I was only at nine!
The journey has been even more rewarding than I ever expected. As a former urban planner, I love exploring new cities on my trike. I love being in the wide open spaces too, the forests, the mountains, looking out on the oceans. There are so many deeply kind people in our country, and that brings me hope for all of us.
I had 17 marathons planned for 2020 (crazy, I know, but we don’t know how long my health is going to hold out); I got to four before the coronavirus shut everything down. As disappointed as I was (especially since 30 friends were supposed to come with us to Alaska!), I recognized that so many people were suffering much worse and I focused on how much we had to be grateful for.
After stalking race websites all summer, we found the Bear Lake Marathon Trifecta in Idaho, Wyoming, and Utah. We drove from North Carolina with a car full of hand sanitizer, wipes and snacks. Turns out Bear Lake is nicknamed “Caribbean of the Rockies”: beautiful, clear turquoise water, ringed with mountains, where you can drive right up onto the sandy beach…amazing. And we never would have discovered it if not for the 3 races in 3 days.
I’m up to 20 races now with a few more planned for the fall. Regardless of if they happen or if I get to 50, I never forget how lucky and blessed I am. I have watched too many friends die from ALS, leaving their children, parents, spouses, and loved ones behind. They would give anything for more time; there was nothing they could do to keep ALS from stealing it. I race to honor them.
Even though my speech is slurred and I use a walker to get around, my purpose here is resolute. I will dedicate my life to raising money for ALS research so that – one day – no other family will have to go through the devastating journey that is ALS.