Many New Orleanians' first memory of former Saints player Steve Gleason is of his blocked punt against the Atlanta Falcons in the team’s first game back in the Superdome after Hurricane Katrina. And Gleason soon became a fixture of the New Orleans community, frequently seen at Jazz Fest, Mardi Gras or on the bayou with his wife Michel.
For over the last ten years, Gleason has been living with ALS. Also known as Lou Gehrig’s disease, the condition attacks nerve cells and renders patients unable to move, speak and breathe on their own.
But despite these seemingly insurmountable challenges, Gleason has had some extraordinary accomplishments since his diagnosis. He summited Machu Picchu, fathered two children, founded the Team Gleason organization, and got Congress to pass the Gleason Act, which ensures that eye tracking and speech generating medical devices are available for those who need them.
Most recently, he published the memoir, A Life Impossible: Living with ALS: Finding Peace and Wisdom Within a Fragile Existence, written entirely with his eyes. He spoke with Louisiana Considered’s Alana Schreiber about his book and what it reveals about his family, feelings, and ALS journey.
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Alana Schreiber: I just finished reading your book and I'm wondering, when and why did you decide to write this book? What were the goals behind it? What were you hoping that readers would learn?
Steve Gleason: We're now 13 years into our journey with ALS. And while I'm not sure there's ever the perfect time to share our experience with the world, this time seemed good enough to carry out my intention in writing this book.
This is my story, our story, of enduring drastic change, suffering heart-crushing loss, and ultimately finding a way to move through those circumstances, to discover strength, wisdom and peace of mind. It's not a book about ALS, Alana. It's not a book about sports, and it's not a book about dying. This book is about living, and loving, the life we have.
I'm obviously a little biased, but I believe this story is a human story. 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. And we all experience suffering. I'm sure all of you have dealt with some version of suffering.
It was my intention in writing this book to share my deepest pain and vulnerability. And also my weaknesses, imperfections, and outright failures, so that people who have been through similar situations, can at the least, know they have a friend with them on their journey, it's clear to me. That sharing our shortcomings and vulnerabilities with each other is our greatest strength, our salvation, even if their respective experience might not be as intense or dramatic.
I wrote this to share my life, our life, for anyone who might benefit from it. This is a book about seeing adversity as the ultimate opportunity to grow stronger and better. Then to discover the extraordinary freedom within each of our own hearts, minds, and spirit. It was my intention in writing this, to share what I have learned on this journey with others so that they, too, can live productive, meaningful lives, no matter what circumstances they may be in.
AS: Thank you for such a thoughtful response, and as someone who just finished your book, I can say that definitely came through. I'm wondering about the writing process for you. What is it like to write an entire book with your eyes?
SG: I type with my eyes, letter by letter, so to write this, it took a physical toll. To write for hours each day for two years, it took patience and discipline. People often talk about writer's block, but I think I experienced something of the opposite, thousands of times over the past couple years.
Ordinary writers may have a wonderful idea to get on the page, then they quickly write it down. I typed so slowly, that wonderful idea that was so vivid, eventually slipped into the fog as I trudged, and typed. After 12 years of using my eyes to do everything, including writing this 20 chapter book, my eyes are weakening, so my speed of typing, is slow. And communication is decreasing to painfully slow rates.
That became more apparent in the final chapters and editing of the book. It also took an emotional toll to relive the most lacerating and vulnerable times of my life. Then to share those experiences in a raw, truthful and human way, rather than a heroic or hallmark way, took an extraordinary amount of trust.
AS: One of my favorite chapters to read was Michel, the story of how you met and fell in love with your wife. And I'm just wondering if you can talk to us a little bit about writing that – what you liked about it, but also was it difficult at all to to publicly share so much information about this relationship? Was there anything that you were hoping to achieve specifically by being so open about the intimate details of this relationship?
SG: Michel and I embraced 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. Additionally, I don't see this as a one time, happily ever after occurrence. Life will continue to present us with difficult relationship challenges, and we'll ultimately miss the market times. So we'll have the opportunity to respond with forgiveness.
With truthful, compassionate and transparent discourse, we chose to share our vulnerabilities, in part because thousands upon thousands of other couples with ALS, and even couples without ALS, experience the same challenges.
AS: I also really loved reading about your fatherhood journey. Your children, Rivers and Gray, are a huge part of this book. So what do you hope that they, or maybe even other children of parents with ALS, might learn by reading the book? What are the lessons for them?
SG: Parenting is difficult, not just for me, or other parents with ALS. Parenting is difficult for everyone who cares about being a good mom or dad, and as a parent, and a person, hope is no strategy of mine.
As parents, I believe that presence is our purpose. To simply be present, with no timeline, or agenda. To pay full attention to our kids. That is equal to love. Fatherhood has been a huge and crucial part of my entire ALS journey, as the disease progressed, and evolved, so has my outlook on, and approach to, parenting.
I have been passionate about being involved in our kids' lives, but trying to be super involved has been a point of suffering for me, my family, and caregivers. Not being able to be the actively involved and engaged parent that I've always wanted to be, and that I see other dads getting to be, has broken and tethered my mind.
I often have to rely on the help and enthusiasm of other people to relay any message to our kids. Most of my messages must go without the tone of compassion, very slowly, and most importantly, without my enthusiastic energy. Over the years, I've evolved my approach to fatherhood. Rather than being a disciplinary teacher-type dad, I work to experience life with Rivers and Gray.
I call Rivers and Gray, “brother,” and “sister,” quite a bit. And I tell them that they are ultimately in charge of their lives and choices. I regularly say that it's okay to aim high, but in the end, they are good enough just being you as they explore, learn and grow in this life.
At the end of the day, may you know this Rivers and Gray: In both of you, I am well pleased. Keep showing up. At this point, I'm here to be an example and love them as unconditionally as possible. That will never change, ever. No need to talk or lecture. In those instances, I work on trusting that my presence alone is indeed enough. I am here to grow, and learn, fall and fail, and ride the wave of life with them.
Eventually, our offspring will be our equal, in stature and knowledge, and eventually surpass us. It's an evolutionary inevitability. I quite look forward to stepping aside as they take the lead.
AS: One line that really stuck out to me reading the book was when you mentioned having a conversation with someone else who has ALS, and he said that he didn't think he would be alive if you hadn't blocked that punt. And of course, we’re talking about the famous blocked punt against the Atlanta Falcons in the Saints’ first game back at the Superdome after Hurricane Katrina.
So what do you think he meant by that? That he wouldn't be here if you hadn't blocked that punt? And how do you think that that one moment has led to so much of what you do today for Team Gleason and the ALS community?
SG: In 2006, when I blocked that punt on Monday Night Football, it was undoubtedly a phenomenon that was much more important than winning a football game.
I didn't realize just how much more, until a text conversation with Brian Johnson. Brian is a former pastor from New Orleans who was diagnosed with ALS in 2020, and has become a dear and trusted friend. In my book, I share our conversation and the impact and meaning it has had on the lives of tens of thousands of people, including me.
Brian said to me, this is not meant to be disrespectful, “Every Saints fan knows exactly where they were that night. And your name became immortalized in one play, in every New Orleanian's mind. I'm curious. If you hadn't blocked that punt, do you think your reach and impact on ALS would be the same?”
This is the type of question that I've enjoyed pondering my whole life. My answer was, “If I don't block the punt, I am probably not alive.”
He was appreciative of my brutal honesty, and his response was, “So if you hadn't blocked the punt, then I'm probably not alive either.” He said, “At the time I was just excited. Some long haired surfer dude lifted my spirits, after I lost everything in Katrina. But you actually saved my life.”
So many people have told us that our foundation's efforts and support have saved their lives. If I didn't block that punt, I'm just another has-been football player. It's probable that I just fade away and die anonymously. I don't see any of this happening.
Here we are. I did block the punt Alana, and this community, my family and friends, and their love, continue to uplift me throughout this crazy wonderful journey with ALS.
AS: One of the things that I find so incredible about Team Gleason is that it's not just about finding a cure. It's about helping people with ALS live the best lives possible. It's getting them life-saving technology. It's taking them on adventures they never thought about. It was helping that one man in Puerto Rico get evacuated to safety after Hurricane Maria. It's really just been so remarkable what this organization has done.
And so, with all of that, what do you think that your book, “A Life Impossible,” can help achieve? What can it do for people with ALS, for families, for Team Gleason?
SG: Writing this book was an exercise in embracing uncertainty, vulnerability and accountability. And I wrote it with the intention of offering kinship to absolutely anyone who is navigating the foggy unknown.
I'd like to think this book is a testament to our human capacity to discover light in the darkest of times – the light within all of us, our ability to be still and sit with pain, frustration or sorrow. To discover the extraordinary within ourselves. I wrote it to share my life, our life, for anyone who may benefit from it.
AS: Steve Gleason, former Saints player, founder of Team Gleason, ALS patient and advocate, father, husband, so many things to so many people, and most recently, author of the memoir, “A Life Impossible.” Thank you so much for having me in your home today for a really unforgettable conversation.
SG: It's my pleasure, Alana.
