Celebrate What You CAN Do: A Conversation with Augie Nieto

The following is a piece written by Unsinkable’s Silken Laumann from her interview with Augie Nieto

 

On the back of Augie Nieto’s best seller, Augie’s Quest, there is a quote that resonates for me even beyond endorsements of Jerry Lewis, Arnold Schwarzenenegger, and Lance Armstrong. It is from Bob Saget:

“People don’t know how much they can do, and when someone is stricken with something that is incredibly difficult or impossible to fight and they do something, that is like moving mountains.”

This captures what I know about Augie Nieto – he is a man who moves mountains. When I reached out to him, he was 14 years into his battle with ALS and only a few days ahead of his biggest annual fundraiser. When I requested to write a story about him he promptly wrote back to say yes and then added, “Please excuse my typos, I’m typing this email with my feet.”

Augie Nieto is a giant in the fitness industry, having founded one of the world’s most successful fitness companies and building it into an industry leader. Go into a gym anywhere in the world, and you will see his weight machines, stationary bikes, and elliptical trainers proudly emblazoned with its logo, Life Fitness. Augie has known success in business and in life beyond most people’s imaginations. Just over a decade ago he was living large, traveling with his new wife and high school sweetheart, Lynne, and crossing adventures off their bucket list.

In 2004, Augie was told he had ALS. He was devastated when he realized what that really meant. “I was in denial,” he described, “how could this be happening to me? I worked out every day, ate right, my health had always been a priority.” He went to multiple ALS clinics hoping for a different diagnosis, and each visit confirmed the awful truth, he had ALS.

Augie struggled to imagine living life with ALS; he didn’t want to use a wheelchair, he didn’t want to burden his family, he didn’t want to ask others for help. “ I couldn’t imagine a future with ALS,” he explained, and so Augie attempted to take his own life.

When he came to in the hospital, he was surrounded by family. Seeing their faces made him understand that they loved him no matter what.

“I realized I was so fortunate to have these amazing people in my life, and I wanted to do all I could to be part of their lives. I came out of the hospital with a renewed vigor to make a difference, to change the landscape of ALS, to find a cure.”

This was the turning point for Augie. “After I tried to take my life, I realized how much I had to live for. I’d experienced success in my professional life, and I felt compelled to create that same success in the ALS world.” That mission began with a goal to raise a million dollars to fund ALS drug research. When he realized it takes 100 million dollars to develop a drug, he chose to go for it and has successfully raised that amount. Now he is one of the founders of the ALS Therapy Development Institute.

I have met Augie several times, and it is impossible to talk about him without talking about his smart, dynamic, open-hearted wife, Lynne. Her optimism and personal courage is a huge part of the Augie and Lynne team. They seem to share their goals and dreams together, and it is clear to me that her passion for her husband and their shared quest to find help and eventually a cure for ALS is a driving force in their marriage. On Valentines Day, they published a love story with ALS as a central character. Augie credits ALS for teaching him what unconditional love is. “Even before ALS, I wasn’t always easy to live with, but Lynne and I both take our vows very seriously—in sickness and in health. Lynne is a rock star, and the one who should be applauded for creating our love story. I love with every ounce of my being—she has taught me what love means.”

Living with ALS is a big job. Augie has a ventilator that helps him breathe, he needs suctioning to remove secretions from his lungs. He cannot communicate verbally and uses his feet to type through a special computer system. His patience is immeasurable: “A conversation that used to take ten minutes takes an hour.” And yet each day, Augie and Lynne take at least an hour together to communicate, to connect; most couples I know might do this once a week. I wondered if managing the disease on top of fundraising and advocacy was too much, if it took a negative toll on his health. Augie’s reply says it all, “In fact, I think my focus on Augie’s Quest actually helps my health. I have something to live for, and a purpose.”

Living with purpose seems to be the fuel that keeps Augie’s life burning bright. Purpose and love. He says he is most proud of the meaningful relationship he has with his family, and that watching them grow is his greatest pleasure.

When I asked him what he would say to someone who is struggling with a diagnosis of ALS or another issue that feels hopeless to them, what would he say?

“I would say that you have to re-define normal every day. Especially with ALS, what you can do today, will change quickly, sometimes by the week. So, you have to celebrate what you can do instead of mourning the loss of what you can’t do.”

Fourteen years into an ALS diagnosis, Augie is still living large in a different way. He is inspiring others, sharing hope, investing in deep and meaningful relationships and giving back big to the world. Thank you, Augie.