Great books change readers.
Perhaps it takes the reader to an unexplored place, such as the mind of a person whose body has given up. Or it may inspire readers to abandon long-held notions of human limitations.
The same goes for Steve Gleason's A Life Impossible. The subtitle is “Living with ALS: Finding Peace and Wisdom in a Fragile Existence.” Published by Alfred J. Knopf, his release date is April 29th.
Gleason, a Gonzaga Prep graduate and former football and baseball player at Washington State University, is now a philosopher, activist, and survivor. And, specific to our purpose today, he is a very talented storyteller.
Let Gleason describe his life with amyotrophic lateral sclerosis: It gradually robs people of their ability to exercise and, in turn, destroys their quality of life. The senses and brain are still alert, but the ability to walk, talk, swallow, and breathe gradually disappears. ”
The 47-year-old Gleason, who has grown to 210 pounds as a seven-year NFL veteran, is now “…a scrawny sack of flesh and bones,” he wrote. I have been using a wheelchair for over 10 years. I have been living on a ventilator since 2014. ”
He calls his motionless body a “prison,” but thanks to eye-tracking technology, he still shares his frustrations and fears with the world from a unique perspective.
At this point, all of Gleason's breathing is machine-generated. Through the difficult eye movements of “typing” on a digital keyboard, he reveals how fragile his existence is. For example, when he was taken off the ventilator for 90 seconds and helped into the shower, he said, “It's like practicing dying.”
But Gleason adds the optimistic caveat common to nearly all of the book's revelations of unimaginable suffering: “I deserve every single oxygen-rich, indescribably glorious breath.'' “I don't think of it as something like that,” he added with gratitude.
Over 320 pages, Gleason describes the skirmish between his still body and his active mind.
It is raw, honest and eloquent.
“The desire to do something to prove my worth was a theme in my life even before ALS,” he wrote. “I'm 10 years past my expiration date, but I'm alive!” I have the opportunity to be stronger, better, and start again. ”
Gleason has long proven his worth in non-lethal situations.
His story has been widely covered, but for those who are unfamiliar, here is a brief background.
Gleason played football and baseball at Gonzaga Prep and WSU. Small for his position, he had speed, ferocity, loving contact and a knack for finding action.
“Athletics was the driving force that gave me the confidence to accomplish everything I set out to do,” Gleason wrote. “My success in track and field helped me overcome my shyness and social awkwardness.”
Initially undrafted in 2000, he made a career on special teams in the NFL, becoming a game-changer for the New Orleans Saints with his velocity and power.
His punt block in the Saints' first home game after Hurricane Katrina was widely seen as a symbol of the city's rebirth in 2006 and was immortalized in a bronze statue outside the Superdome.
Jeff Duncan, who collaborated with Gleason on the book, covered the Saints during Gleason's time and remembers Gleason as a charismatic iconoclast. Amidst the locker room antics of his teammates, he could often be found quietly reading a novel in his cubicle or telling curious reporters the story of Gleason's past. – I go on adventure trips in the off-season.
Gleason's unconventional and embracing approach to life endeared him to Saints fans, Duncan said. Gleason became even more popular among fans when he married Michelle Varisco, an artistic, fun-loving and cheerful New Orleans native who epitomized his hometown.
Everything changed in 2011, when Gleason began to slowly decline and, at the age of 33, was diagnosed with an incurable disease that would kill him within two to five years.
As his physical abilities declined, his international profile as an activist for the treatment and cause of ALS expanded, leading to his recognition as a Congressional Gold Medal recipient in 2020. This is his first NFL player to be so recognized.
As Duncan explains Gleeson's painstaking work with eye movements, the text evokes images of medieval monks holed up in their manuscript rooms, delicately producing manuscripts at an endless pace.
“It's really amazing,” Duncan said of the device. “The computer tablet shines an infrared beam onto the retina, which reflects off the cornea and returns to the fixation point.”
Gleason also had the foresight to build a library of his speaking voice before he lost it, and can now summon synthesized “voices” to aid in communication.
Gleason, who spent much of his final days as his athletic ability was declining, working on the 2016 documentary Gleason, was initially hesitant to take on the book project when approached by Duncan. Ta.
“Steve is a strong believer in telling the truth, given his candor, honesty and unvarnished view of the impact of the disease,” Mr Duncan said. “He and Michelle wanted to put it all out there and be honest about it because they want people to see what it's really like. Steve says many times, ' We don’t need after-school specials or Disney stories, this is real.’ And I think that’s what makes it so powerful.”
This book is complete, up-to-date, and stands well on its own. But as a sensory accompaniment, I recommend the reader to watch the documentary “Gleason”. The documentary provides visual and audio footage of Steve increasingly struggling to communicate.
These photos capture the exhausted look on the wife's face, making the viewer feel the relentless demands placed on her. In one scene, Michelle is depicted bottle-feeding her son Rivers with one hand and trying to care for Steve with the other.
Steve and Michelle humbly reject the notion of being heroic. “They're both very adamant that they're just people trying to get through this as best they can,” Duncan said. “(They) say we're flawed, and we're going to expose that (also).”
The book advances the documentary story to Gleason's more recent stages, with pages giving voice to the cries of his thousands of hearts and translating the anger that could otherwise only be seen through his eyes. . It also reveals that he found peace by releasing expectations on himself.
In the first chapter, Gleeson describes how he feels every day, from the humble process of waste collection, which requires the help of a janitor, to the moment when his daughter Gray cries for her father. It narrates scenes of “powerlessness and weakness.” Steve is unable to calm or comfort her, but he does give her attention.
“Life has become a dance of change and loss,” he writes. “I lose abilities and we adapt…Each time we lose, we have had to develop new routines.”
Gleason gives an example of the duality of nobility and humility in his life. In the summer of 2012, he attended a ceremony outside the Superdome to unveil a statue of his iconic punt block.
“It was a wonderful day,” Gleason wrote. “But on the way home from the ceremony, I was losing the ability to control my bowel movements. As soon as I rolled into the house, I pooped in my wheelchair.”
Such a clear counterpoint is “…is my life.”
The biggest loss? She lost her ability to converse with Michelle, Gleason writes, and the basic friendship that was the basis of their love was undermined. “This didn’t tear me apart…it wiped me out.”
Michelle, he writes, was also erased because she made a huge sacrifice in her caring work. “We were more like a nurse and patient than a couple.”
In the most moving and revelatory parts of the book, Gleason extracts directly from typed “chat” conversations with Michelle, moments in which they openly discuss the rift in their marriage caused by years of togetherness.
Even the most talented fiction writer would have a hard time depicting this level of painful burden relief when Steve and Michelle consider the forces that keep them apart.
Lose and adapt. Gleason looked deeply into himself again and recognized the value of what was left within him.
“After crying tears of sadness, I was reborn.”
In 2018, Steve and Michelle gave birth to their second child, Gray, through IVF.
The later chapters of his book reveal such developments and important findings regarding reception.
“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 inherent peace in the midst of chaos. There is light in the darkness. It is within us all. Light. I know it. I live it.”
The only gift of having everything taken away is how a person can discover what is at their core.
Even if, as he claims, he is now a gaunt sack of flesh, he continues to live an impossible life, fueled by a strong spirit that is indomitable and inspiring.
