Living with ALS: Finding Peace and Wisdom Within a Fragile Existence
By Steve Gleason (’00 Busi.) with Jeff Duncan
Alfred A. Knopf: 2024
He can no longer move or breathe. And that makes getting ready each morning quite a “workout.” Steve Gleason starts his autobiography by describing what he endures to prepare to face the day. A ventilator breathes for him while a crew of caregivers performs a string of mundane tasks: showering, getting dressed, having breakfast. These are actions that most take for granted, chores people complete each morning without much thought, things that make the former football standout feel powerless.
Imprisoned in his own body, once the exemplar of athleticism, Gleason tackles what is perhaps his most courageous feat: candidly sharing his journey through the withering, excruciating, and incurable disease amyotrophic lateral sclerosis, or ALS. His inspirational memoir serves as a testament of the will to live.
“I do not take one glorious, oxygen-rich ineffable breath for granted,” writes Gleason, who has now lived with ALS longer than he played professional football. He has leveraged his star power to reach a wider audience— through his Team Gleason nonprofit committed to improving the lives of people with ALS, the 2016 Gleason documentary detailing the first five years of his diagnosis, and this intimate and profoundly vulnerable portrait of psychological perseverance.
At Washington State University, Gleason played baseball and football, helping the Cougs get to the 1998 Rose Bowl. The Spokane native and Gonzaga Preparatory School graduate details this and other milestones—along with his “no white flags” motto—in his unsparing narrative. “My attitude was, I have this diagnosis and even if it does crush my body, it’s not going to crush my mind and spirit. It’s not going to define my life. This is my opportunity to be an example to other people, and to my family—an example of resilience.”
In 2010, Gleason began to notice “strange twitches” in his upper arms and shoulders. They spread to his chest. Lower back. Upper quads. He experienced increased muscle spasms and weakness, underwent a battery of tests, withdrew from his MBA program, took a leave of absence from his job, and started searching for a miracle.
Gleason was 33 in early 2011 when he received the devastating diagnosis. Weeks later, he learned his wife, Michel, was pregnant with their first child. The couple wed in 2008, the same year he retired from the NFL. Gleason had played for the New Orleans Saints since 2000 and is perhaps best known for his 2006 blocked punt in the Saints’ first game in the Superdome following Hurricane Katrina.
Within a year and a half, Gleason was losing his ability to move his thumbs. “Three years into my diagnosis,” he writes, “the disease had stolen nearly all of my physical abilities and affected every aspect of my life.”
ALS is relentless. Most die within two to five years of the diagnosis. Gleason is, he says, “more than ten years past my expiration date.” He wrote his story with eye-tracking computer technology and help from sports columnist Jeff Duncan.
His disbelief becomes acceptance. He waxes philosophical, pens notes to his children, Rivers and Gray, and shares letters with his wife. He doesn’t understate the effects of ALS on any aspect of his being. “ALS is a training ground for wanting only what you have,” he writes. “As you have less, you must learn to want less. You must find new creative ways to explore and expand.”
Still, he admits, “The loss of my voice was particularly crushing.”
It seems, however, that though he can no longer speak, his voice is now more powerful than ever.
An excerpt from A Life Impossible
On January 5, 2011, I was diagnosed with amyotrophic lateral sclerosis, a rare neurodegenerative disease that damages the nerves that control voluntary muscle movement. ALS, commonly known as Lou Gehrig’s disease, is relentless and humiliating. It progressively robs people of their motor skills and, in turn, destroys their quality of life. Although your senses and brain remain sharp, you gradually lose the ability to walk, talk, swallow, and breathe.
Today, I’m well past the point of being able to move, talk, or breathe on my own. The powerful legs I once used to race down-field on National Football League kickoffs now are withered. My arms, once muscled and ripped, are frail and motionless. My 5-foot-11 frame, once a strapping 210 pounds, is now an emaciated meat sack of flesh and bones. I’ve lived in a wheelchair for more than a decade. I’ve lived on a ventilator since 2014.
Lou Gehrig, the famous Major League Baseball (MLB) player for whom the disease is named, died two years after he was diagnosed. Most people diagnosed with ALS follow in Gehrig’s steps—death comes a few years after diagnosis. I’m clearly biased, but I’d say I don’t look too shabby for being more than ten years past my expiration date.
Life with ALS prevents me from enjoying some of the things that ordinary people might take for granted. One of the realities of my life is that I’ve never hugged our kids, or more importantly, Rivers and Gray have never been hugged by their dad. Ever. If you saw your daughter weeping in the middle of your bathroom floor, wouldn’t you pick her up?
I expressed this tension between wanting to do more as a father and loving unconditionally to one of my mentors and teachers, Peter Crone, known as the Mind Architect. Peter insightfully responded, “Steve, your presence is enough.” Hearing those words, a massive emotional burden was lifted. I decided that being present is my purpose. I know it’s not true that I am not worthy or that I don’t matter. My presence IS enough. I live from this place.
My body is a prison. I face insurmountable adversity each day, yet my family and I are able to survive and live within this miraculous, wonderful life. I have learned to accept things that are out of my control, to transform suffering into strength. I move through fear to discover the extraordinary on the other side. We all face the impossible at some point in our lives. By exploring acceptance, love, and the power of the human spirit, I recognize the innate peace in the midst of chaos. There is light in the darkness. The light within all of us. Every day. Every precious moment. I know it. I live it.
From A LIFE IMPOSSIBLE: Living with ALS: Finding Peace and Wisdom Within a Fragile Existence by Steve Gleason with Jeff Duncan. Reprinted by permission of Alfred A. Knopf, an imprint of the Knopf Doubleday Publishing Group, a division of Penguin Random House LLC. Copyright © 2024 by Steve Gleason.
Web exclusive
Read another excerpt from A Life Impossible: Resolve, Chapter 13