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The undying bravery when facing a monster within

by | Sep 25, 2022 | Comment, Detroit Free Press | 0 comments

DANA POINT, Calif. − What does courage look like?

Does it have a face? A style? A barking loud voice? Or is it rather, as I believe, a sort of quiet deep within that lets you fight when others would flee?

I had a chance to see courage up close Friday night, at an annual event in California to benefit Augie’s Quest. In order to grasp what Augie’s Quest is, you first have to know who Augie is.

Augie is Augie Nieto, a gray-haired man now in his early 60s, who, at 19 years old, discovered an exercise bike called the Lifecycle and decided to market it nationwide. You’ve probably seen or used a Lifecycle if you visited any health club in the country over the last 40 years.

Augie parlayed the stationary bike business into a successful corporation called Life Fitness, which specialized in exercise equipment. He became quite rich. By his late 40s, he had one of those lives that make others stew with envy. Massive success, seaside California home, beautiful wife, healthy kids, cars, boats, entree into all the right professional groups.

And then Augie got ALS.

Lou Gehrig’s disease.

And nobody envied him anymore.

The mind still works

Augie will tell you that his initial reaction to the disease was anything but brave. He tried to kill himself with a bottle of pills. How could a strapping, competitive, Type-A achiever face a future of quick decay, loss of limb usage, loss of speech, and being confined to a wheelchair until he died, most likely in two or three years?

“Go home and get your affairs in order.” That’s what Augie and his wife, Lynne, were told. What that meant, initially, to Augie, was get it over with. Fast.

But when he woke up in the hospital after that suicide attempt and he saw his family gathered around him, he felt ashamed. He also saw what he had to live for.

So he considered his biggest skill — developing businesses — and realized it wasn’t touched by ALS. The mind stays intact throughout all the physical decay.

Which is when Augie and Lynne formed something called Augie’s Quest, an operation dedicated solely to finding a cure for the disease. They ran it like a business, raising big money, hiring the best people, using workplace motivators to achieve the most linear success possible.

“It might be Lou Gehrig’s disease,” Augie told his staff, “but it’s going to be Augie Nieto’s cure.”

To date, Augie’s Quest, and its adjacent ALS Therapy Development Institute have raised north of $180 million toward one goal: finding a cure. They actually have a drug in medical trials now, and if you know what it takes to research, discover, develop and usher a drug into actual medical trials, you know what a Herculean accomplishment that already is.

But the work alone is not what makes Augie and Lynne courageous.

It’s the conviction. The unwavering belief that things can get better.

‘Let’s go dance’

How many of us crumble as soon as things look bleak? How many of us say, “I just can’t handle it” when stress rises, when work puts on pressure, when a relationship becomes strained?

Imagine trying to lift the wreckage of hope destroyed by an ALS diagnosis? How heavy would that hoist feel?

And yet here, on Friday night, was an athletic woman named Peggy, recently diagnosed, using a walker now to take slow, labored steps, but smiling and saying, “They told me ALS would be a challenge … but I always liked a challenge.” She plans to participate in her 24th marathon soon.

Or a middle-age man named Albert, who had to hook his fists under his chin as he spoke to me because “My neck won’t hold my head up, sorry.” He had never heard of Augie’s Quest until his recent diagnosis, but within days had booked a plane ticket from Miami to fly to California for the event, because, he said, “something told me I needed to be here.”

Or Augie himself, who has been living with ALS for 17 years, far longer than anyone projected. On Friday night, he’d been dressed in a suitcoat, hair perfectly coiffed, fingernails manicured, yet he was still flat out in an electric wheelchair, unable to speak, move, or react to all the love and accolades.

Instead, with one big toe working a computer trackwheel, he arduously tapped out words on a screen, one letter at a time, to express what he was feeling.

And yet, at the end of the evening, after speeches, tears, tributes — and another million dollars raised — a musical act began performing, and Augie typed to his incredibly loving and dedicated wife, “Let’s go dance.”

What does courage look like? It’s not always physical — a mountain ascent, punching out an attacker, running into a fire.

Sometimes it’s the voice inside that, against all odds, firmly responds, “I will not give up.”

It is inspiring to behold.

Contact Mitch Albom: malbom@freepress.com. Check out the latest updates with his charities, books and events at MitchAlbom.com. Follow him on Twitter @mitchalbom.

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Mitch Albom writes about running an orphanage in impoverished Port-au-Prince, Haiti, his kids, their hardships, laughs and challenges, and the life lessons he’s learned there every day.

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