I was ready to ask the critical question. To know the truth.
Looking straight into the doctor’s eyes, I asked, “Do I have ALS?”
“Yes,” she said simply.
Reporters often ask how I felt at that moment?”—the moment I was diagnosed with ALS.
But that moment doesn’t exist for me. That moment is sand slipping through my fingers.
That moment is the long, twenty-month journey leading up to it—moments revealing the entire story: a stuck finger, tight hamstrings, balance issues during a triathlon, a fall in the street, a spinal tap, appointments with five neurologists, mind-numbing fear, conflicts with my parents, and scene after scene of confusion and terror.
That moment doesn’t matter, except to underscore one singular thought that pushed out all others: I have no more time to waste in this life.
Mostly, I remember walking out of the appointment into the warm sunshine, talking to my parents and husband, and later eating pizza. Walking, talking, eating. Who knew how much longer I would be able to do any of those things?
There was no fighting with my parents that night. Our stalemate had been abandoned. I had my people, and they had me.
I realized that, for all ALS destroys, it can’t take away my family or the sun warming my face. As long as I live.
“How did you feel the day after your diagnosis?” This is the far more interesting question reporters never ask. Not the moment you learn you’re going to die, but the first day you wake up with that knowledge and have to figure out how to go on living.
I stretched out in the unfamiliar white sheets of our hotel bed, blinking my eyes, unsure of what to do next. Unsure of how to feel. The paralyzing anxiety of not knowing was gone. The what-if questions bouncing off the walls of my brain for almost a year had quieted at last. I assumed a soul-crushing depression would now descend. So I waited.
My husband David felt me stirring and rolled over.
“What do you want to do today?” he asked softly.
I had no idea. My calendar ended yesterday. What do you do the day after you’re told you’re going to die?
We had both taken the day off work. I could not remember the last time we had a full day all to ourselves with absolutely no plans. I could tell just by the sun streaming through the curtains that it would be a steaming hot day.
Grinning, I said, “I want to go to a water park.”“What?” David started laughing.
But we didn’t. We did grown-up, responsible things like calling the insurance company and filling prescriptions.
But David’s question stayed with me, knocking around inside my head.
What do you want to do today? It might as well have been, What do you want to do with the rest of your life? Since apparently there weren’t too many todays left for me.
I want to do another triathlon, came the answer from deep in my soul.
A few weeks later, my friend Julie and I entered the pool area to start the triathlon—a swim, bike, and run event—and what I assumed would be my last race ever.
At the swim start, I watched athletes of all ages, colors, shapes, sizes, and abilities launch themselves into the pool, while others waiting cheered them on. When else do you get to see something like this? Mesmerized, I tried to take it all in for the very last time.
When I was told to “go,” I launched myself into the frenzy of the pool.
My body felt strangely disjointed. My breathing was shallow and all wrong. I swallowed, snorted, and coughed water. Fear gripped my muscles and wouldn’t let go. I had to pause at the end of each lane to relieve the bottleneck of swimmers treading water behind me.
Sweet relief to be out of the pool and in the transition area. I laid eyes on my new three-wheeled trike and smiled. We’d bought it just for this race, so I could participate in the bike portion.
I enjoyed every inch of those nine miles of asphalt streaking beneath my tires. So much had been taken away from me in the past year—I reveled in the feeling of getting it back, for even one day. I never dreamed I would have this much fun again.
Once the bike was done, I still had the “run” portion of the triathlon to finish. By now, the other racers were done with the entire race and probably off to Sunday brunch, chowing down on pancakes and sipping mimosas.
Only two miles. I repeated to myself. Two trekking poles had replaced my trusty four-footed cane. They clanked and scraped on the concrete, providing little assistance. All ten toes cramped in my shoes. Both feet dragged me forward slowly. My knees locked out with every step.
I wouldn’t quit.
It was crazy that only one year before I had finished a half-distance triathlon—and hadn’t been last. My brain was difficult like that—remembering things so vividly, reminding me of how things used to be.
Stop it. I shut down the inner dialogue. All I had to do was put one foot in front of the other, over and over again. Julie and I moved like turtles, but we were moving.
Although I knew our friends and family would be waiting, I didn’t expect anyone else to be at the finish line. But as we rounded the final block, I heard loud music and the entire crowd cheered.
With Julie supporting me on one side and David on the other, I walked through the pandemonium to the finish line. “We Are the Champions” blasted at full volume. I can’t look around. I will lose it.
That finish line forever changed me. I felt something reverberate through my whole body and soul. The support, energy, and love coming from every direction, every person, everywhere I looked—it was the very best of humanity. All that goodness directed straight at me.
The spark ignited. I knew I could inspire people with my story and do more for ALS research. I was grateful for my still-beating heart. I felt so much love—for my family, for the spectators who stayed at the finish to give a dying woman a beautiful, happy memory to last a lifetime—no matter how long or short that would be.
It felt new and different, like a springboard—but a springboard to what, exactly?
Excerpted from Hope Fights Back: Fifty Marathons and a Life or Death Race Against ALS by Andrea Lytle Peet with Meredith Atwood. Copyright © 2023. Published by Pegasus Books.