'There is light in the darkness': Book by former WSU football great Steve Gleason gives readers a powerful glimpse into life with ALS

Apr. 20—Great books change a reader.

Maybe they transport readers to unexamined places, such as inside a person's mind once a body has abandoned it. Or maybe they cause readers to abandon long-held notions of human limitations.

So it is with Steve Gleason's "A Life Impossible." Subtitled: "Living with ALS: Finding Peace and Wisdom Within a Fragile Existence." Published by Alfred J. Knopf, with a release date of April 29.

A graduate of Gonzaga Prep and former football and baseball standout at Washington State, Gleason is now a philosopher, activist, survivor. And, specific to our purpose today, he's an extremely talented story-teller.

Allow Gleason to explain his life with amyotrophic lateral sclerosis: "(ALS) 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."

After having been a chiseled 210 pounds as a seven-year NFL veteran, the 47-year-old Gleason writes that he 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."

He calls his motionless body "a prison," but, thanks to eye-tracking technology, he still communicates to the world, sharing his frustrations and fears, with a unique perspective.

At this point, Gleason's every breath is generated by a machine. With arduous eye movements, "typing" on a digital keyboard, he reveals how truly fragile his existence is. For instance, when he is taken off his ventilator for 90 seconds and helped into the shower: "It's like a practice of dying."

But with an optimistic caveat that is common in nearly every revelation of unimaginable hardship in the book, Gleason appreciatively adds, "I do not take one glorious, oxygen-rich, ineffable breath for granted."

For 320 pages, Gleason provides accounts of these skirmishes between his bestilled body and his kinetic mind.

It is raw and honest and eloquent.

"The desire to do something to prove my value has been a theme in my life, even before ALS," he writes. "I'm a decade past my expiration date, and I'm alive! I have an opportunity to grow stronger, be better and begin again."

----Gleason has been proving his value, in nonlethal circumstances, for a long time.

His story has be widely covered, but a brief history for those unfamiliar:

Gleason starred in football and baseball at Gonzaga Prep and WSU. Undersized for his position, he was fast and fierce, loving contact, with a knack for finding the action.

"Athletics was the engine that gave me the confidence to do everything I did," Gleason writes. "My success in athletics allowed me to shed my shyness and social awkwardness."

Initially undrafted in 2000, he fashioned a career on NFL special teams, where his ballistic qualities of velocity and force made him a game-changer for the New Orleans Saints.

His blocked punt in the Saints' first home game after Hurricane Katrina was so widely viewed as a symbol of the city's 2006 rebirth that it was immortalized in a statue outside the Superdome.

Jeff Duncan, collaborator with Gleason on the book, covered the Saints during Gleason's years, and remembers him as a charismatic iconoclast, often found quietly reading a novel in his cubicle amid teammates' boisterous locker room behavior, or telling inquisitive reporters stories of his far-flung adventure travels in the offseason.

Gleason's unconventional, life-embracing approach endeared him to Saints fans, Duncan said. Gleason became even more popular with fans when he married New Orleanian Michel Varisco, an embodiment of her home town — artistic, fun-loving, joyful.

Everything changed when Gleason began feeling progressively weaker in 2011, and was diagnosed, at age 33, with an incurable condition predicted to kill him within two to five years.

As his physical abilities decreased, his international profile as an activist for ALS treatment and causes expanded, leading to his recognition as a Congressional Gold Medal winner in 2020 — the first NFL player to be so acknowledged.

----As Duncan explains Gleason's laborious writing via eye movements, it evokes the image of medieval monks, cloistered in their scriptoria, delicately producing manuscripts at an interminable pace.

"It's really kind of mind-blowing," Duncan said of the device. "It has an infrared beam that is beamed from his computer tablet into his retina and bounces off the cornea back onto where he fixes his gaze."

Gleason also had the foresight to build a library of his speaking voice before losing it, and can now call upon a synthesized "voice" to help with communication.

Gleason had given many of his last days with waning mobility to the process of making the 2016 documentary, "Gleason," and was initially hesitant to take on the book project when Duncan approached him.

"Steve very much believes in telling the truth, (given) his level of candor and honesty, and the unvarnished look at what the disease does," Duncan said. "He and Michel wanted to lay it all out there and be truthful about it because they want people to see what it's really like. Steve says over and over, 'We don't want an after-school special or Disney story, this is going to be real,' and I think that's what makes it so powerful."

The book is complete, current and ably stands alone. But as a sensory accompaniment, I would recommend readers watch the "Gleason" documentary, which supplies the sights and sounds of Steve's increasing struggle to communicate.

The images capture the exhaustion in the eyes of his wife, and allows the viewer to sense the unrelenting demands upon her. In one scene, it shows Michel trying to bottle-feed their son, Rivers, with one hand, while tending Steve with the other.

Steve and Michel humbly reject the notion of being heroic. "Both of them are adamant that they're just humans trying to navigate this the best they can," Duncan said. "(They say) we've got flaws and we're going to show those (too)."

----The book advances the narrative of the documentary, into Gleason's more recent stages, with the pages giving voice to his thousand internal screams, and translating the rage otherwise visible only through his eyes. It also reveals the peace he's found in his release of expectations for himself.

Within the first chapters, Gleason recounts scenes of the "brutal powerlessness and vulnerability" he feels each day, from the humbling process of waste-extraction that requires the help of caretakers, to those moments when his daughter, Gray, may cry for her father's attention while Steve is helpless to calm or comfort her.

"Life became a dance with change and loss," he writes. "I would lose abilities, we would adapt ... each loss forced us to develop new routines."

Gleason gives an example of the ennobling/humbling dualities of his life. In the summer of 2012, he attended a ceremony outside the Superdome, unveiling the statue of his symbolic punt block.

"It was an epic day," Gleason writes. "But on our way home from the ceremony, I was losing the ability to control my bowel movements. As soon as we rolled into the house, I pooped all over myself in the wheelchair."

Such stark polarities, "... are my life."

----The greatest loss? Losing the ability to converse with Michel, Gleason writes, eroded the foundational friendship that had been at the root of their love. "This didn't tear me up ... it obliterated me."

Michel was also obliterated, he writes, as her care-taking duties took a withering toll. "We were more like nurse and patient than husband and wife."

In the book's most moving and revelatory segment, Gleason directly extracts from his typed "chat" conversation with Michel the moment they openly addressed the marital fractures caused by their years of shared struggle.

It would be hard for the most talented fiction writer to capture this level of painful unburdening as Steve and Michel reckoned with the forces that were pulling them apart.

Lose and adapt. Again, looking deeper into himself, Gleason realized the value of what was left inside.

"Through tears of grief, I was reborn."

----In 2018, Steve and Michel welcomed a second child, Gray, through in-vitro fertilization.

The latter chapters in his book reveal such developments, as well as an important discovery of acceptance.

"We all face the impossible at some point in our lives," Gleason writes. "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 us all. Every precious moment. I know it. I live it."

The only gift of having everything taken away is how it allows a person to discover what is at their core.

If, as he claims, he is now an emaciated meat sack, he remains fueled by a powerful spirit — indomitable and inspiring — living a life impossible.