Remembering my friend Augie Nieto.
“It’s not enough to have lived. We should be determined to live for something..” -Winston S. Churchill
After an uncompromisingly courageous 18-year-long battle against ALS, one of the most resilient, impactful and joyful individuals I’ve ever met died last week. The lessons he taught before dying, though, should be learned and applied by the rest of us as we determine to start more fully living.
Augie Nieto and I met in 2015 at a leadership event hosted by the University of Southern California.
At that point Augie had lived with the brutal realities of Amyotrophic Lateral Sclerosis (ALS) for over ten years. Having his physical health slowly fleeced from him, knowing the trajectory of the disease, and recognizing the certainty of losing everything, Augie tried to take his own life shortly after receiving the diagnosis at age forty-seven.
Surviving that experience ignited within him a deep desire to not only refuse to surrender to the disease, but to become a masterful example of abundant life in spite of it.
We connected after my talk and spoke for almost an hour. I asked what the most difficult aspect of this brutal disease was.
He responded, “I . . .”
Augie sat motionless in a motorized wheelchair. He was unable to move any muscle other than the big toe on his right foot. Using technology he helped design, he was able to use his toe to type letters and communicate with friends.
“Don’t . . .”
Augie was a pioneer and leader in the fitness industry before his ALS diagnosis. He founded, grew, and eventually sold the hugely successful brand Life Fitness. For Augie, fitness wasn’t just work, it was life. He epitomized health and was a world-class athlete.
“Want . . .”
This one sentence had already taken him more than a minute to type. It was laborious, requiring all his mental effort and physical strength. The seemingly simple task of moving his big toe to type these words was grueling.
“To . . .”
Occasionally his eyes glanced over at me to make sure I was paying attention— and to let me know he was enjoying being heard.
“Be . . .”
At this moment someone approached thanking me for speaking. I asked him if he’d ever met Augie. He hadn’t. The gentleman then stuck out his hand to shake Augie’s. Augie stared back. After an awkward silence, the gentleman pointed at Augie, told him he looked great, turned, and walked away. As I watched the man exit the room, Augie finished his sentence.
While he could not undo his diagnosis nor change his reality, he did wish one thing from those around him: “I don’t want to be ignored.”
What terrified Augie was not the painful progression of ALS, or even the inevitable loss of life. It was that in almost every room he was in, people looked past him, ignored him, or felt sorry for him.
Augie Nieto built a wonderful business, a lavish lifestyle, traveled the world and enjoyed the kind of life most can only imagine.
And yet, he reserved his finest work and greatest impact for the final 18 years of his life.
Although the disease slowly robbed Augie of his life, he refused to become a victim to it. A man who once attempted to take his life because of the disease, fought for every moment of it after surviving. He loved more fully, lived more passionately, and gave more generously. Augie raised 190 million dollars for ALS research.
So while he died last week, he taught those he encountered what real courage, real success and real life looked like in action.
Augie, my friend, you were impossible to ignore because you were bigger than some disease.
We love you and thank you for teaching us the gift of our lives.
This is your day. Live Inspired.