Today was supposed to begin our epic journey to Alaska with a stopover in Olympia, WA for Marathon #20. We would have spent the following week in Ketchikan and Prince of Wales Island, sightseeing and speaking to schools leading up to the POW Marathon, which would be Marathon #21 and the finale of our documentary. All with 30+ members of Team Drea, their families, and friends we have made along the way. A triumph of love, spirit, and community over ALS.
Instead, like so many plans derailed by the virus, we are home. I am stuck indefinitely at Marathon #17, left wondering if I made a huge mistake investing so much of our foundation’s resources into a film about marathons when there aren’t any.
I’m relearning the lesson from my diagnosis: tomorrow is not promised; it never was.
I’ve been letting my heart take the lead because my brain is exhausted. That feels reminiscent of post-diagnosis too. After a year of obsessing over what if and dreading the worst news, the shock of learning I was going to die soon still stunned my brain into silence.
In the silence, my heart stepped forward. It didn’t command the lead, the way my brain would, asserting its power over everything. Instead, it whispered questions I had to get still enough to hear.
What matters most now?
What will bring you joy?
How can you make the world better?
Then, as now, the answers came surprisingly easily and they haven’t changed much. But now I have six years of beautiful memories, new tools for coping, a flock of swallow tattoos on my arm, and a community of friends who have stepped up over and over again to support me, us, and ALS research.
Races will come back, we will go to Alaska next year, the documentary will be finished, and hopefully I will remain strong enough for another 33 marathons. If nothing else, the past six years have taught me patience.
To give my brain a goal to get excited about, I am participating in ALS TDI’s My State Trek. Usually, the Tri-State Trek takes place over 3 days in June with 500+ cyclists riding 270 miles through MA, NY, and CT. I trike the last 9 miles with the scientists, which is an honor and something I look forward to every year.
Since the Trek is virtual this year, I can do all 270 miles. Basically, when DP does his daily boxing workout via Zoom in our garage, I trike for an hour in our cul-de-sac – something our friend Glynis refers to as “Hamster Time” because it creates hilarious routes like this:
Our cul-de-sac is a hill, which is actually great training for me AND creates even more hilarious speed profiles like this:
And nauseating, swaying helmet cam videos like this, which hopefully our filmmakers can cobble into some kind of a quarantine montage in the documentary:
I have done 87 miles in our cul-de-sac and have grown to love hamster time, listening to audiobooks and enjoying a glorious spring. It’s not the thrill of a marathon and I miss swimming with my mom and doing Pilates with real equipment (instead of hand weights, dishtowels, and Zoom), but it’s been good. Compared to the turmoil, stress, and sadness that many others are going through right now, it is a dream.
If you are in a position to give and would like to support my cul-de-sac journey, here is the link to my page. Donations will go directly to ALS TDI to get the funds in the lab as quickly as possible. Any gift is appreciated but here are some fun suggested amounts:
$1/mi = $270
$0.50/mi = $135
$0.01/mi = $27
Stay safe, my friends.