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'A Life Impossible' chronicles all aspects of Steve Gleason's incredible life

'This isn't a heroic story or an after-school special, it's real'

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Steve Gleason would prefer not to be viewed as some heroic, mythical figure.

The former New Orleans Saints safety and special team ace (2000-06) doesn't see that reflection in the mirror and doesn't pretend to.

But "A Life Impossible" – Gleason's soul-bearing, unvarnished-truth sharing book (co-authored by Jeff Duncan) that chronicles his life before and after his ALS diagnosis in 2011 – isn't likely to help his cause.

It's 284 pages of the best and worst of Gleason, and all points in between, encompassing the frailties and fears associated with having a terminal disease, and an indomitable will that has helped him and those closest to him forge through that, and more.

"The impetus for writing this book was to share what I feel is a human story," Gleason said. "This isn't a heroic story or an after-school special, it's real. And my intention in writing it was to share the connection that we all have.

"We all experience adversity, we all encounter heart-crushing loss, we all experience suffering. This is a book about seeing adversity as the ultimate opportunity to grow stronger and better, then to discover the extraordinary within each of our own hearts, minds and spirit."

Former New Orleans Saints football player Steve Gleason and his wife Michel walk onto the field before the first half of an NFL football game against the Houston Texans, Sunday, Sept. 25, 2011, in New Orleans.

The book is the culmination of a three-year process from proposal to completion, and Gleason personally, painstakingly and meticulously allows everyone inside his world from youth to present, with few if any guardrails, including the totality of ALS, also commonly known as Lou Gehrig's Disease.

"It is a remarkable feat," said Gleason's wife, Michel, a significant contributor to the process. "It's a big deal. The dude can't type, and he writes a book. It's a remarkable feat.

"We actually had no idea – I don't think he knew what he was getting into. Like most things, neither did I. What we all went through was one of the most difficult things we've ever been through, having to kind of relive our whole story and then the physical toll it took on him to write a book with his eyes, and the emotional toll on all of us. So to finally actually see the book, have it look good, have it be reviewed so well – luckily, the book is what it is today because it was a lot of hard work."

Duncan, an author and sports columnist for The Times Picayune/New Orleans Advocate, said Gleason's resilience shone through.

"And if you know Steve, he very much doesn't like to be championed as a hero, he doesn't like to be framed as some kind of iconic figure or somebody that's better than anyone else," Duncan said. "That's why (Gleason and Michel) chose to take the path that they did with the book, to show their human vulnerabilities, that they're just a couple trying to make it through a very difficult situation. And to show their failures in life.

"He wanted to put all that in there, but what I saw with Steve was probably the same traits that allowed him to forge an NFL career after being an undrafted free agent (in 2000, out of Washington State), the same principles of attention to detail and discipline and drive and work ethic that allowed him to hang on in the NFL and then become a really valued member of the team and an alternate Pro Bowler and a special team captain. All those traits were the same things he used on this book process."

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Gleason was told to likely expect a two- to three-year life expectancy upon diagnosis 2011.

"We're now 13 years into our journey with ALS, and while I'm not sure there is ever the perfect time to share our experience with the world, this time seemed good enough," he said.

"This is my story, our story, of enduring drastic change, suffering heart-crushing loss, and ultimately finding a way to move through these circumstances to discover strength, happiness and peace of mind.

"It's not a book about ALS. It's not a book about sports. And it's not a book about dying. This book is about living.

"It was my intention in writing this book to share my deepest pain and vulnerability, and also my weaknesses, imperfections and outright failures. It's clear to me that sharing our shortcomings and vulnerabilities with each other is our greatest strength. Our salvation."

To say that Gleason was heavily involved in the project would be an understatement. Despite his limitations, the book has Gleason's prints all over it.

"He was not going to just put something out with his name on it," Duncan said. "That's just not the way he operates. And luckily, we had everybody on the team with the same mind-set as that. Because it would have been easy to just do a halfway job on this book and still sell a lot of books, because of Steve's celebrity and popularity.

"But it meant way more to him than that. I mean, he really wanted this book to be part of a legacy of his life. And I think he also wants it to be part of his legacy for his kids, and also for everyone in Team Gleason that he feels somewhat of a connection to, or maybe even a responsibility to provide hope for them on this shared journey that everybody is on."

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Gleason wrote the book with his eyes, via a keyboard equipped with eye-tracking software, and that process brought with it some extra difficulties.

Due to the progression of the terminal disease – it attacks the nervous system, leaving one unable to walk, talk, move or breathe on their own – he lost the ability to blink.

"In the book, we detail part of that," Duncan said. "Early on in the writing process, he started having issues with his eyes, and it's still ongoing. This is something he's still battling, the ability to close his eyes, to blink his eyes, which of course is how you moisten your eyes. Steve's eyes are his whole life. It's how he communicates, it's how he gets around. How he does everything is controlled through his eye tracking technology on his computer, on his tablet.

"And he was typing about 25 words a minute at his best, which is pretty good. But when he started having trouble with his eyes, where he couldn't keep his eyes focused on the letter to be able to engage it with the eye-tracking technology, everything slowed down and he was down to, like, five to 10 words a minute that he could produce.

"He was exhausting himself every day. At one point, he even said, 'This book's literally killing me.' And it wasn't exaggerating. He was exhausting himself so much in the goal of making the deadline that he was causing physical harm to himself."

Duncan said the condition hasn't been diagnosed, which led Gleason's care team to create a way to manage it.

"They've tried everything," Duncan said. "The best thing they can do right now is just manage it, so literally every day we'd be working on the book, he'd have to type in, 'Eye break.'

"And he'd take an eye break, usually eight to 10 times a day, where the care team would take him off the tablet and they'd tape his eyes shut with medical tape and put drops in his eyes. And he'd basically just meditate for 15 minutes or a half hour, keeping his eyes taped closed. And then they'd peel it back off, and he'd go back at it again.

"He's just a warrior. But it was rough there for a while. Thankfully, Knopf (the publisher) was totally understanding. They worked with us, I think because they knew it was such a unique and extraordinary situation, they were willing to push the envelope with us to make the production deadline."

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Gleason said that unlike most authors, he could not quickly scroll through a chapter and revise or edit.

"I have occasionally bragged on social media, 'I get more done in two days than most people get done in 15 minutes!' " he said.

"(But) I told my core friends that writing this book was the most humbling and difficult thing I've ever done. That is a pretty bold statement, considering that I faced microscopic odds to play in the NFL and I got cut twice in my first two seasons.

"Over the last 11 years, I've typed and communicated through email, texts, journals and speeches. Fortunately, most of these words were saved. Jeff had the initial and difficult task of collating our written history from the outline we worked on together, along with Michel. Our Write On group also helped validate and provide answers to questions we had. So, initially, we had a great deal to work with.

"Amidst the exhaustion and challenges, there's also a sense of purpose and fulfillment in seeing the project through. The opportunity to share such a personal and profound story with the world, and the potential impact it may have on readers facing their own trials and challenges, serves as a powerful motivator to continue to embrace the difficulties."

The retracing of steps was part of the arduous process.

"So he's going through stuff with his brother, talking about his childhood with his brother, then college friends and our love story, and all the difficult things we've been through," Michel said. "It was like a roller coaster, and emotionally some days we were both absolutely taxed.

"And then having to write about it, and deal with the physical – us trying to get on paper what he wants to say, even though he's not able to type as fast as we want. And then his eyes won't work some days. It was effin crazy," she said, laughing.

And, then, Gleason was an absolute perfectionist.

"The first couple of drafts come through, and it's a lot," Michel said. "And Jeff and I, in the beginning, we have to reread it, reread it, reread it. We've had to read it 100 times to make sure, because he can't just type everything.

"So we have to read it to him to make sure that it's cool for him and he has what he wants to say in it and it's all his voice. I think it's always a lot of work, but for someone who can't type and speak, it was a tremendous amount of extra work making sure it ended up being what he wants it."

Cover to cover, "A Life Impossible" is Gleason's word, along with a heaping from Michel and a helping hand from Duncan. Duncan said Michel's name belonged on the cover of the book as much as anyone's.

"I suspect most people writing a memoir think about stopping their project and, yes, we suggested doing it several times," Gleason said. "Michel and I took significant risks by openly and transparently sharing our journey as a couple navigating the profound challenges of life with ALS.

"As you delve into the raw experiences we've encountered, it might feel as though you're eavesdropping on intimate conversations. Yet, these candid, poignant dialogues served as our path to redemption and healing amidst adversity.

"We chose to share our vulnerabilities in part because thousands upon thousands of other couples with ALS, and perhaps without ALS, experience the same challenges. When we decided to write the book, we committed to making it a raw and honest story.

"I believe we accomplished that."

New Orleans Saints legend Steve Gleason visited the Ochsner Sports Performance Center on Wednesday, May 1, 2024 where he delivered copies of his new book "A Life Impossible: Living with ALS: Finding Peace and Wisdom Within a Fragile Existence" to owner Gayle Benson, head coach Dennis Allen, plus several players and coaches.

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