CORONA DEL MAR, Calif. Lindsay Nieto remembers it well, the day her father told her he was dying. She still was in high school, and, with her older brother, she met her dad and stepmother at a coffee shop before classes. “They came walking towards us, holding hands, and they never did that,” she says. “Then my father asked us to come sit in the car. The first thing I thought was, ‘Who’s in trouble?'”
The answer, it turns out, was him. Augie Nieto, a handsome, powerfully built, multimillionaire businessman who made his fortune in exercise equipment – he created the Lifecycle – had just spent a week at the Mayo Clinic. “He told us he had been in Vietnam, waterskiing, and he kept falling down,” Lindsay said. “Then, when he got home, he couldn’t shave his own face.”
The diagnosis was ALS. Lou Gehrig’s disease, a brutal, degenerative illness that snips the connection between the brain and muscles and leaves you a stiff, immobile husk, needing others to feed you, bathe you and carry you around. Most patients only live a few years.
Nieto seemed far too healthy, far too blessed and far too young (just 47) for such a fate. Then again, the disease was named for a Yankees baseball legend who contracted it while still playing.
“Once Dad told us he would probably die, I didn’t hear anything else,” Lindsay said. “I don’t know if I even went to school. All I remember is them saying, “‘Don’t look this up on the Internet. Because it’s really bad.'”
That was nine years ago.
By most expectations, Augie should be dead.
But some motivations make dying unacceptable. Saturday, at a park by the Pacific Ocean in Rancho Palos Verdes, Calif., Lindsay, 25, will marry her handsome fiancé, Chris Williams, 28.
Augie plans to walk her down the aisle.
What is impossible? Just a relative term. We refer to it in sports all the time: an impossible pass, an impossible shot. And then that pass or shot is made, and we shake our heads and set the bar higher.
Here in Corona del Mar, in a cliffside house more befitting a movie star, the impossible seems to be happening again. The garage is filled with exercise equipment, special harnesses, weights, pulleys, a treadmill. And at least three days a week (more when he demands it), Augie Nieto and several therapists go through grueling workouts. Yes, workouts. Pushing stationary bike pedals. Rotating arm handles. All with one dream in mind: moving down the aisle, his daughter by his side, as he gives her away to be wed.
“I can’t wait to see him walk,” Lindsay says. “He’s been in a wheelchair for the last nine years, more or less. Seeing him vertical – it’s like my heart stopped. I don’t know how I’m gonna keep myself from crying the entire time.”
It wasn’t always this way. Augie’s disease followed the normal progression, which means a gradual slide down the rabbit hole. Starting in 2005, he lost the ability to climb steps, to grab things, feed himself, wash his hair, brush his teeth, pull on his pants, wipe his rear end. He lost the power to speak.
He didn’t handle it well. Not at first. Depressed by the prospect of such a long fall from his high-flying world, Augie tried to take his life by swallowing pills.
He woke up in the hospital.
“I remember going to see him,” Lindsay says. “When he opened his eyes, I said, ‘Of all the things you are successful at, I’m glad you failed at this.'”
It was a wake-up call in the loudest sense. Today, typing on a special computer by maneuvering his big toe, Augie says of his suicide attempt, “I didn’t want to be a burden on my family….What I learned is the role of being a coach instead of a player.”
And as the years passed, the sicker he got, the further he traveled from his old normal life, the closer Augie Nieto grew to his loved ones. Wheelchair-bound, unmoving, he discovered an incredible capacity to give. He wrote two books, typing with his toes. He made appearances to raise funds for others. He even inspired Red Wings owner Mike Ilitch so much that in 2008 he sent the Stanley Cup (chaperoned by goaltender Chris Osgood) to Augie’s southern California home for a visit.
“Before it was all about me,” Augie says. Since then, it has been about the whole world.
Augie applied his sharp business acumen to creating Augie’s Quest, a partnership with the Muscular Dystrophy Association that essentially works as a fully functioning company – a company with a single business plan: to find a cure for amyotrophic lateral sclerosis.
To date it has raised more than $30 million, employed a multitude of scientists and researchers, and reached significant milestones in marching toward its goal.
On Saturday, Augie will try to walk 20 feet.
His milestone might dazzle them all.
The man behind the machines
It’s funny. Augie’s original company, Life Fitness, and his current company, Octane Fitness, are staples of the sports world. Teams from the San Francisco 49ers to the Los Angeles Dodgers to the Indiana Pacers to the Cardiff Blues rugby team train on the equipment.
And while linebackers and power forwards use his gear to stay in shape, Augie works with therapists in his garage who lift him into special harnesses, move his legs, guide his arms and marvel at his increasing strength.
“I’m not taking any special drugs,” Augie types, addressing a frequent question of those who can’t believe what they are seeing. His wife, Lynne, a staple by his side, confirms this.
“It’s as if the disease just stopped progressing,” she says. “And now he’s using what he always had, that desire to work out and push himself.”
She smiles. “For this first time in nine years, we’re not talking about this being the last birthday or the last Christmas. We’re back to talking about what comes next.”
What is impossible? Lynne Nieto, who first met Augie in high school, has tested the “better or worse” vows of marriage more than most of us can imagine. Life as the partner of an ALS patient brings challenges as severe as the victim’s. Preparing Augie is a 3-hour process each morning. Everything is slow and painstaking. Pulling on underwear. Shaving. Proper placement in the wheelchair. Making sure his breathing tube, computer and foot mouse are functioning properly.
Life moves one breath at a time. And yet Augie says, “I have never been more in love with Lynne,” and Lynne says, “Our marriage has never been better.”
Their union even inspired their daughter.
“The song that will play as we come down the aisle will be Jason Mraz’s “I Won’t Give Up,'” Lindsay says. “It makes me think of my dad and Lynne. Quiet honestly, I can’t imagine being in a marriage that changes so drastically. You go from traveling the world, having a partner that bungee jumps, sky dives, rides the backs of elephants – and suddenly you are wiping their butt. Yet you take care of them 100%. Like that song suggests, a relationship can change over time. But that doesn’t mean you give up on it. And that’s what I told Chris, my fiancé, I said, ‘I will only marry once. It will only be you. I won’t give up. Ever.'”
Daddy’s girl.
The power of song
What is impossible? Polio used to be a death sentence. Bubonic plague used to kill millions. Things change. Cures are found. Life goes on. We evolve.
Augie Nieto never saw his life as an ALS victim. Neither did his wife nor children. But, as Lindsay admits, “I sometimes wonder what relationship we’d have if we didn’t have his illness. We weren’t as close before. We’ve actually begun to celebrate the blessings that we’ve had a result of him getting sick.”
Augie types it more succinctly: “It’s like the blind man who can see better.”
Or the nonwalking man who is suddenly walking. Yes, it will take hours of preparation. Yes, Augie will need to be lifted by his four brothers into a special harness. Yes, a therapist will be behind him, making sure his legs don’t buckle.
But they will be Augie’s steps – unsteady, perhaps, but as determined as a king’s. If it’s a miracle, so be it. Lindsay will take his arm. The waves will hit the shore. And the two of them will live out every father-daughter dream, moving down the aisle, as a well-chosen song plays on the speakers:
I won’t give up on us
Even if the skies get rough
I’m giving you all my love
I’m still looking up
Yeah. Try not crying atthat wedding.
For more information on Augie’s Quest and how to make a donation, go to augiesquest.org. Contact Mitch Albom: 313-223-4581 or malbom@freepress.com.
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