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Blog 17: Making the most of today

by Andrea Lytle Peet

Of all the clever race signs out there, this is the one I like the most:

After the thrill of completing my first half Iron-distance race in 2013 (the now-defunct Carolina Half in the Lake Norman area), I assumed I’d do another – maybe decades of them, and at least one Ironman – once our future children were in school and my career was on track.

The certainty with which I made these predictions about my life is bittersweet to me now – sweet on good days and bitter on bad ones.

How could I have known “the day I could no longer do this” would come after that race? I was only 32.

Looking back, I’d been slowing down all summer in my training. My hamstrings felt tight and it seemed like I had to concentrate awfully hard on running to keep from tripping over my feet. Two months later, convinced I had a race injury, I saw a physical therapist, who said “Your muscles just don’t seem strong enough for someone who did that long of a race.” She recommended a neurologist.

Fast forward 8 months (and 5 neurologists) to my diagnosis. By then, I was walking with a cane after I had fallen in the middle of a downtown D.C. intersection. My voice had slowed down too, and I couldn’t clap normally. Totally bizarre.

ALS is a progressive neurological condition that inhibits the brain’s ability to communicate with the muscles. People with ALS become paralyzed as they can no longer move their muscles to walk, speak, eat, or eventually, breathe. In that time, the person’s mind stays sharp, watching his or her body die – usually in 2-5 years.

The initial shock that I was going to die came as less of a gut punch than you might expect. The news settled into my husband and me slowly, giving us a wide-eyed haunted look – too much for our brains to comprehend, but unable to look away or blink. It didn’t seem real, so we didn’t even miss work. We clung to the idea that this kind of thing happened to other people, not us.

By August, when my ALS diagnosis was confirmed, the Ice Bucket Challenge phenomenon had taken over the internet and the world learned how horrifying ALS is. I paid particular attention to the videos featuring people with ALS – stiff, frail bodies hooked up to scary-looking tubes. I couldn’t absorb that that would be me, one day soon.

About that time, I came across the 2005 NBC coverage of Jon “Blazeman” Blais at the World Championships in Kona. He is still the only person to have completed an Ironman with ALS unassisted. He was my age, 33, and died less than 2 years later. But still, he did it.

That video changed my life, as it has for countless triathletes. Jon proved that the strength of human will propels us across the finish line, far more than the body.

“If Jon could do an Ironman, surely I could do a sprint triathlon,” I thought. And so I did in October 2014. I completed the Ramblin’ Rose Chapel Hill women-only super sprint on my new recumbent trike and walked the run with trekking poles.

My best friend Julie and I came in last by 40 minutes with about 100 strangers cheering us in. As I wrote on my blog, and later in a feature story in Endurance Magazine:

“Walking through the finish chute with everyone cheering and crying, honestly, I couldn’t look around.  I would have lost it.  People say I inspired them, but it is nothing compared to what reverberated through me from all sides.  It was the very best of humanity.  What is it like to have that force of compassion directed at you?  It defies words.  Jon Blais knew.  And now I know too.”

The race changed my perspective on my journey with ALS. I felt blessed, lucky, and profoundly grateful. I wanted other people to be able to experience the triumph of accomplishing more than they thought possible, the strength of their muscles and minds, the camaraderie of the sport.

And so I created Team Drea – a group of friends and family who took on a race that represented a challenge to them as a way to raise money for ALS research. What started out as 30 team members with a modest goal of $7,500 has grown to 150 athletes in 2 years and raised $150,000. And I thought I was overwhelmed by kindness before…!

Now, Fillnow Coaching and I want to invite you to join Team Drea too. We will be doing the Spartan Half Marathon & 5k on May 6th in Davidson. So far, we have about 30 runners and will be hosting a brunch afterwards.

All you have to do is make sure to say that you’re with Team Drea when you register (the race director is personally donating $3 per runner) and fill out this form so we know to expect you. We’re asking everyone to fundraise or donate at least $50 here for ALS research.

I will be doing the half marathon on my trike. Somehow, I continue to defy the odds and this will be my 21st race since diagnosis. Last year, I completed 12 races (3 marathons, 2 triathlons, 6 half marathons, and 1 virtual race) in honor of people with ALS who have inspired me.

I will continue to race as long as I can because, well, someday I will not be able to do this…but that day is not TODAY.

Be brave,

Andrea Lytle Peet