He couldn’t walk, but he moved mountains. He couldn’t speak, but he said so much. He couldn’t write, but he left behind countless messages, and his last one, which appeared a few days ago, showing up in hundreds of email boxes, contained the simple, aching phrase:
Keep me in your heart.
He couldn’t die. That’s what we all thought. And yet he did. Quietly, quickly, from pneumonia, last week, with his wife, Lynne, by his side, as she has been by his side almost every minute since ALS struck him 18 years ago. He thought it was over then. So did most people around him. He tried to kill himself. It didn’t work.
Maybe that failed attempt made us think he would outlive us all. I know I felt that way. I know I came to believe that despite the disease’s inevitable decay, the loss of movement in his hands, feet, head, shoulders, his lips falling limp, his vocal cords going silent, that despite all that, Augie Nieto was indestructible.
But none of us are.
Fought like hell for a cure
It is with profound sadness that I share with the passing of a man. A big, big man. Augie Nieto, 65, was a body builder early in his life, and there is a photo of him flexing his muscles, with his wavy hair and dark, Italian looks, and the last thing you would think of is death.
He built an empire in the fitness business, made a ton of money, hung with high-flying friends, traveled the world, smoked cigars. But in his late 40s, while waterskiing in Vietnam, Augie began falling. He had trouble shaving. He came home and got the diagnosis that no one wants to hear.
ALS. Lou Gehrig’s disease.
Degenerative. Progressive. Deadly. Incurable.
The first three adjectives scared the hell out of Augie. But the fourth was unacceptable. Every problem had a solution. That was his mantra. It was how he built Life Fitness into a behemoth, and advised or oversaw major companies like Octane Fitness, Curves, Jenny Craig and Quest Software.
So he began to attack ALS the same way. Build a company. Hire the best people. Pay them well. And tell them they had one product and one product only to pursue.
Over the years, even as he was relegated to a wheelchair, even as he could only communicate through a trackball with his big toe and a machine that simulated his voice, Augie built Augie’s Quest (which is what he called the effort) into the world’s most effective private attack on the disease.
He raised over $190 million, all of which went to study, research and development of treatments, not so much to save him — although we all privately wanted that — but to save the next person, so that when they heard “You have ALS,” they didn’t rush to take their life.
A guy like that, directing a $190 million operation from a silent wheelchair, can’t die, right?
Well. “Can’t” and “shouldn’t” are not the same thing.
His mission lives on
I met Augie around 2005, when he asked someone I knew for a copy of my book, “Tuesdays With Morrie,” and I decided to deliver it myself. I am so glad I did.
That began an 18-year friendship that was warm and joyous and uplifting and, I have to admit, rather one-sided. Not because I could walk and Augie couldn’t. But because after our regular visits, in which I did a lot of talking and he occasionally tapped a computer message with his toe, or pushed up the corner of his mouth (laughter) or widened his eyes (delight, surprise) I always left, despite never hearing his voice, feeling I had gotten so much and given so little.
Augie inspired. He motivated. He made you want to be better because he was doing so much with such limitations. When you hugged his limp shoulders or took his manicured hand, you could feel him filling up with the joy of human touch, and you filled up as well.
His huge wheelchair went many places. On boats. On airplanes. To Mexico. To visit his kids. Mike Ilitch once arranged the Stanley Cup to be brought to his house and it wound up in his lap (I was there for that, and so was Chris Osgood, the Wings’ goalie.)
Augie appeared at board meetings and charity fundraisers. Most importantly, in 2014, 10 years after his diagnosis, he harnessed himself to some aluminum scaffolding and “walked” his daughter Lindsay down the aisle of her wedding.
He seemed unsinkable. The Unsinkable Augie Nieto. No matter what setbacks the disease would throw his way, he swatted them back with proper disdain. In his presence, you felt invincible. You could beat anything.
And then, last Thursday, I got the news. Pneumonia had infected his lungs. He’d gone to the hospital. And his battle ended there.
He couldn’t whisper, but he shouted to the hills. He couldn’t lift a finger, but he made the biggest points. His last wish, I am sure, besides health and joy for Lynne, for his four children and his eight grandchildren, was that Augie’s Quest not lose momentum simply because it lost its founder.
“I know that my fight is not over,” he wrote in a message that was constructed before his death. “I have battled ALS for almost 18 years. Physically, ALS has finally taken my body, but my battle to rid the world of this insidious disease will continue.”
So I suppose, since his body has stopped breathing, that this is an obituary. But you don’t write obituaries for people who never die. Augie lives on, his quest lives on, and his life’s passion, that we must, we simply must, find a cure for this terrible disease, lives on as well.
No farewells, then, for the Unsinkable Augie Nieto. Just a lump in the heart, where he wants us to keep him, and where he will always remain.