Well, here we are: 7 years to the actual day when I was diagnosed with ALS (though we didn’t understand what doctor was saying at the time…). It seems like a good day to take stock.
Two years ago, when I reached 5 years living with ALS – a milestone that only 20% of people reach – I celebrated by setting the craziest goal I could think of: a marathon in all 50 states. At the time, I’d only done 7 states. Now (even with a pandemic), I’m up to 30 with an even more insane plan of finishing the next 20 in one year.
When I started, 50 seemed like a dream. Like who knew if I would ever make it, but damn if I wouldn’t go down swinging. Now, it seems ambitious but doable – like schedule mapped out and plane tickets purchased kind of inevitable. These days, my challenges come in the vein of beavers who build a dam which reroutes the race course into a grassy, weed-wacked field:
After that race (#29, Oregon), a woman came over to me. She heard the announcer tell my story as I rolled through the finish arch. With tears in her eyes she said, “You finished right in front of me. My grandmother died of ALS and I began running because of her.”
Well. That puts things back into perspective.
I never want to lose sight of how lucky and blessed I am to be able to do what I do. The physical strength of my muscles, the freedom my Catrike gives me, the financial means to book flights, cars, and lodging rather than worrying about the cost of house renovations or a wheelchair van. And MOST of all, the amazing friends and wonderful husband who get me to and through these races.
When I started, the 50 states were checkboxes. Now they are a patchwork of memories from cities and places we never would have seen, laughs we never would have shared, and moments that brought perspective to just how fragile and magnificent it all is. Life all is.
People ask me how I’m feeling: I feel good, mostly. I’m tired after a marathon or traveling, but who isn’t? I should be. It’s that downtime I forget to schedule. Especially since Montana will make 3 weekends in a row that I’m racing…which is actually a good preview for June, where I’m doing marathons 4 DAYS in a row with Mainly Marathons (MA, VT, NH, ME).
Actually I feel stronger after each race. I am more grounded in my feet can feel my muscles more (because they kinda hurt). I am nowhere near one of Dr. Bedlack’s ALS reversals and if you look at my ALS TDI data, my legs are still declining slowly over time:
I think it might be my mind that is taking over. I know what I have to do and if I’m smart about building muscle slowly, and stretching — and resting! — I think I’m putting more distance between me and my particular, weird brand of ALS.
One more thing: I am so unbelievably fortunate to have a film crew following this crazy journey. While we started Go On, Be Brave documentary to raise awareness and funding for ALS research, my selfish gratitude is growing just to have these moments captured for my friends & family who are in it, no matter what happens now. We are creating this experience together and I’m sooooo excited to see how it turns out. “And by all means, whatever you do, get it on film,” said Jon Blais.
We’re doing it, Jon.