I was ready to ask the critical question. To know the truth.
I looked the doctor straight in the eyes and asked, “Do I have ALS?”
“Yes,” she said simply.
Reporters often ask how I felt about it The Wait?” – the moment I was diagnosed with ALS.
But that moment doesn’t exist for me. At this moment sand is running through my fingers.
This moment is the long, twenty-month journey that leads to it – moments that reveal the whole story: a pinched finger, tight hamstrings, balance problems during a triathlon, a fall on the street, a lumbar puncture, appointments with five neurologists, thoughts – numbing fear , conflicts with my parents, and scene after scene of confusion and terror.
This moment doesn’t matter except to underscore a single thought that pushed out all others: I have no more time to waste in this life.
Most of the time, I remember walking out into the warm sun after the appointment, talking to my parents and husband, and later eating pizza. Walking, talking, eating. Who knew how long I would continue to do all of these things?
There was no argument with my parents that night. Our stalemate was abandoned. I had my people and they had me.
I realized that despite all the devastation ALS has left, I cannot lose my family or the sun that warms my face. As long as I live.
“How did you feel about the day? after Your diagnosis?” That’s the far more interesting question that reporters never ask. Not the moment you find out you’re going to die, but the moment you wake up with that knowledge and have to figure out how to keep living.
I stretched out in the unfamiliar white sheets of our hotel bed and blinked my eyes, unsure what to do next. Unsure how to feel. The paralyzing fear of not knowing was gone. The what-ifs that had been swirling around in my brain for nearly a year had finally stopped. I assumed that a soul-destroying depression would now set in. So I waited.
My husband David sensed me moving and turned around.
“What you want to do today?” he asked quietly.
I had no idea. My calendar ended yesterday. What do you do the day after you’re told you’re going to die?
We both took the day off. I couldn’t remember the last time we had a whole day to ourselves with absolutely no plans. Just by the sun shining through the curtains, I could tell it was going to be a steamy hot day.
Grinning, I said, “I want to go to a water park.” “What?” David started laughing.
But we didn’t do it. We did adult, responsible things like calling the insurance company and filling prescriptions.
But David’s question stuck with me and swirled around in my head.
What you want to do today? It might as well have been What do you want to do with the rest of your life? Since there didn’t seem to be too many left for me today.
I want to do another triathloncame the answer deep in my soul.
A few weeks later, my friend Julie and I entered the pool area to start the triathlon – a swimming, cycling and running competition – and probably my last race ever.
At the swim start, I watched athletes of all ages, colors, shapes, sizes and abilities jump into the pool as others waiting cheered them on. When else do you get to see something like this? Fascinated, I tried to take it all in one last time.
When I was told to “leave,” I threw myself into the hustle and bustle of the pool.
My body felt strangely disjointed. My breathing was shallow and completely wrong. I gulped, snorted and coughed up water. Fear gripped my muscles and wouldn’t let me go. I had to stop at the end of each lane to clear the bottleneck of swimmers treading water behind me.
Sweet relief to be out of the pool and in the transition area. I saw my new three-wheeled trike and smiled. We had bought it just for this race so I could take part in the bike part.
I enjoyed every inch of those nine miles of asphalt that passed under my tires. So much had been taken from me over the past year – I relished the feeling of getting it back, even if just for a day. I never thought I would have this much fun again.
After the bike was finished, I still had to finish the “run” portion of the triathlon. By now the other racers were done with the entire race and were probably heading to Sunday brunch, where they ate pancakes and sipped mimosas.
Only two miles. I repeated it to myself. Two trekking poles had replaced my trusty four-legged walking stick. They clattered and scraped on the concrete and offered little help. All ten toes were cramped in my shoes. Both feet slowly pulled me forward. My knees buckled with every step.
I wouldn’t give up.
It was crazy that just a year earlier I had finished a half-distance triathlon – and not come last. My brain was so difficult – remembering things so vividly and remembering how things used to be.
“That finish line changed me forever. I felt something reverberating throughout my entire body and soul.”
Stop it. I have ended the inner dialogue. I just had to keep putting one foot in front of the other. Julie and I moved like turtles, but we was To move.
Even though 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 last block, I heard loud music and the entire crowd was cheering.
With Julie supporting me on one side and David on the other, I ran through the chaos to the finish line. “We Are the Champions” played at full volume. I can’t look around. I’m going to lose it.
That finish line changed me forever. I felt something reverberating throughout my entire body and soul. The support, energy and love that came from all sides, from every person and from everywhere – it was the best of humanity. All of this kindness was aimed directly at me.
The spark ignited. I knew I could use my story to inspire people 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 line to give a dying woman a beautiful, happy memory for a lifetime – no matter how long or short that would be.
It felt new and different, like a stepping stone – but a stepping stone to where exactly?
Excerpt from Hope Strikes Back: Fifty Marathons and a Life-and-Death Race Against ALS by Andrea Lytle Peet with Meredith Atwood. Copyright © 2023. Published by Pegasus Books.