Michel and I went swimming in the shallow water of the Gulf of Mexico to get in some light exercise without putting too much strain on my body. I waded along the shoreline in chest-high water so I could still touch the sand with my feet. Then, very gradually, a subtle undertow pulled me into deeper water. In astonishment and with raw, primal fear, all I could do was look at Michel, and do my best to cry “Help.”

I had always been a strong swimmer, but now I was seeing and comprehending in stark detail just how much my body had withered. My eyes fixed on Michel, and although she couldn’t hear my quiet pleas, she saw my face and instantly recognized the fear within me. My breathing quickened and my heart rate accelerated as I felt my body being pulled under the surface of the water. I tilted my head back and struggled against the undertow like a child just learning to swim.

That was the last time I ever swam in the ocean.

At dawn the next morning, I woke up early and sat on the balcony to watch the sun rise. Later, I sat out there eating breakfast. I stood up, leaned on the railing, and watched people migrate to the water. A glorious sight caught my eye: a father and son playing catch in the sand. It brought back fond and vivid memories of doing the same with my dad. Then, it hit me: I will never play catch with our child.

Baseball was my favorite sport. Football was a business, an extreme workout. But baseball is a boys’ game, fun and carefree.

I couldn’t remember the last time I’d tracked and laid out for a fly ball. But I knew I would never do it again. Standing alone, watching the father and son casually throw the ball around, I mourned and moved through another death of the boy I once was. In retrospect, this process of mourning was like a healthy, brilliant game of catch with one of humanity’s closest friends: Grief. But at that moment, all I could wonder was if I could continue to leave “that boy” I’d been behind. And how many losses could I sustain before I completely lost myself?

While my voice was still pretty strong, I started voice banking with a Scottish company to create a synthetic voice. I recorded 1,500 English phrases on my computer and sent them to CereProc technicians, who used what was cutting-edge technology at the time to create a customized voice that sounded similar to mine. The vast majority of people with ALS receive generic computerized voices. This voice-banking technology was a new development that I was extremely lucky to find. It allowed me to explore a way to maintain some of my identity and still remain “that boy.”

While I thought my story might be a national topic of conversation because of my time in the NFL, I decided that the news was best disseminated from New Orleans, my home. This was where I blocked the punt and became a symbol of the city’s own healing. I wanted to be with my family, my New Orleans family, when I shared something so very personal with the world.

We decided to announce my diagnosis in a feature story written by a local journalist whom both Michel and I trusted and loved, Jeff Duncan. I had known him for years during his tenure at the Times-Picayune newspaper.

One morning, I was brainstorming the mission of our foundation and how we could effect change for people living with ALS. I wanted it to be innovative and unique. There were a lot of organizations pushing for a cure to ALS, but hardly any working to help people live with ALS.

“No White Flags” became our mission statement. We immediately trademarked the phrase for Team Gleason. It would become our rallying cry, not just for myself but for everyone in our orbit.

The story announcing my diagnosis ran on the front page of the Sunday, September 25, edition of the New Orleans Times­Picayune; it was the five-year anniversary of the blocked punt. The piece took up three full pages in the A section of the paper and also was prominently displayed on the paper’s website, NOLA.com. That morning, our inboxes and phones were inundated with texts and emails from family, friends, and families of those friends.

The Saints had learned about the timing of my announcement a few days beforehand and invited me to serve as the honorary captain for their home game at the Superdome that day against the Houston Texans. I’d attended many games since I retired, but this was the first time I’d worn my black No. 37 jersey and been invited back on the field. I was excited and nervous.

When we arrived at the Dome, Michel held my hand and led me down the tunnel to the field. We found Drew Brees on the Saints sideline. While we lined up to walk to midfield for the pre­game coin toss, the public address announcer introduced me to the crowd as the honorary captain. I put my left hand on the back of Drew’s shoulder pads to steady myself and slowly walked to midfield between him and fellow team captain Will Smith.

When we reached midfield, as I always did on game days, I looked toward the crowd to immerse myself in the moment. Not long ago, this had been my office. I had been fast, strong, and confident. Now, with 75,000 people watching from the stands, I was half the man I used to be. Rather than bare my chest, I wanted to unravel.

When we reached the 25-yard line, I thought, The time is now Steve-O. No choice, dude. I looked up to the faces in the end zone stadium seats, and I wanted to run. In the middle of the field, with everyone watching, I dropped my head. I felt my lips quiver. I raised my left arm as high as I could above my head and emphatically, as an act of defiance, slammed it down toward the turf to initiate the chant. The roar of the crowd overwhelmed me as they broke into the chant: Who Dat!, Who Dat! Who Dat say dey gonna beat dem Saints?!

A photographer captured the shot of me with my left arm raised. The silhouette of this image would eventually become the logo for Team Gleason. Interestingly, the silhouette used was of the back of me, showing my right arm raised, but we never changed 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.

 

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A review and another excerpt from A Life Impossible by Steve Gleason (’00 Busi.)