One man’s journey from success to significance

Augie Nieto writes about his fight against ALS, better known as Lou Gehrig's Disease, why he fights and why he almost gave up in “Augie’s Quest: One Man’s Journey from Success to Significance.” Here's an excerpt:

DAVID MALCOLM — a friend of Augie and Lynne’s from the Young Presidents’ Organization, a private assembly of business titans with chapters across the globe:

Rob Rodin and I came up with the idea of confronting Augie shortly after his diagnosis. Augie wasn’t being Augie. He was in denial about his disease, so Rob and I decided to set up an evening where we could spend some time together with Lynne and Augie and talk to Augie about dealing with the issues facing him.

We ended up having a pajama party on Augie and Lynne’s boat. We brought six pairs of pajamas, and Lynne and Augie, Rob and Debbie Rodin, me and my wife, Annie, were all in silk pajamas having dinner, drinking wine, and laughing.

Afterward, Augie led Rob and me to the upper deck and took off his shirt. All we could see was his body twitching. I couldn’t believe my eyes and asked him, “What’s happening?” Augie explained that his muscles were detaching and ALS would slowly rob him of his ability to breathe.

We then confronted him about how he was going to deal with his diagnosis. It was Rob who finally said to him, “You’ve been very successful, but how will you use this disease to become significant?”

Until recently, I didn’t know Augie tried to commit suicide the very next day.

Augie:

When I finally woke up in the hospital, I knew what I had to do. It was like throwing a light switch. I felt acceptance — of my symptoms, of my disease — and I felt back in control. I was no longer reacting but was able to act.

Once again, I felt I could be the one who could define the rules and make the game I wanted. In acceptance, I found the capacity to let others help. I could be vulnerable, which made me more approachable, and I allowed people back into my life.

Lynne:

A much-humbler Augie came out of the hospital. I think there was an awful lot of remorse. The day he came home, Augie was determined to tell Austin and Lindsay everything he needed to tell them about how to live their lives.

It seemed as if he was trying to come to grips with what had happened. He was unconscious for almost two days and was frail, but he was clearly grateful to be alive.

Augie:

I felt a complete change in temperament. I could now think through how to take my newfound acceptance and put it into action.

In considering his visit to the dark side, Augie decided, “If that’s the worst, everything else is better. I was no longer fearful, fearful of the progress of the disease, fearful of the knowledge of whether I was loved and respected.” The Augie Nieto who returned home from Hoag Hospital was very different from the man who’d wandered into his bathroom in the small hours of Memorial Day morning to choke down a fistful of pills. Lynne noticed the change immediately. “Augie started looking forward,” she said.

He was back home by the first week in June and already anticipating the planned renewal of his and Lynne’s vows on the anniversary of their marriage. The service was scheduled for later that month, and family and friends who attended saw a renewed Augie, a determined and optimistic Augie, reaffirm his love for his wife of ten years.

During this same period, he was also occupied with a constructive look back. He was only then beginning to digest all the details of his experience traveling the country visiting clinics and doctors devoted to ALS research and treatment. He had been in such an inky funk at the time, a state of psychological shock, that he’d barely been capable of putting one foot in front of the other.

Upon reflection, Augie realized he’d come away with a distinct sense of how unsettled and outright contradictory much of the clinical perspective on ALS tended to be. In reviewing what he’d been told specifically and the literature that had been passed along to him, Augie became aware of how little was known about the disease he had.

No one could say with any certainty whether sporadic ALS, Augie’s type, was genetically based or environmentally induced. Approaches to treatment varied from specialist to specialist, and Augie noticed the pronounced isolation of the neurologists from each other. “Everybody,” Augie remarked, “was working in a silo.”

Historically, ALS research has been conducted by scientists and doctors attached to universities with grant funding supplied by the National Institutes of Health and various nonprofit organizations, led by the Muscular Dystrophy Association. Given the rareness of the disease, the competition for dollars, and the relatively low level of ALS funding ($42 million projected for 2007 for ALS research, as compared to $1 billion for Alzheimer’s and $4.6 billion for cancer), these studies are prone to be modest in scope, and pharmaceutical companies can’t be bothered to invest their considerable research dollars in a disease that has only five thousand to seven thousand new cases annually.

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