“A terminal diagnosis can really mess with your head,” he says, his green eyes locking in on letters for a fraction of a second, until he forms sentences, hits play and the words come out in a semi-robotic monotone. “Honestly, it makes you want to run away to the moon.”
The rains had pelted the city early Wednesday before clearing for the sun, the warmth of the afternoon and another cool evening. But inside the convention center, it was a climate-controlled 70 degrees or so — much like the re-opening of the Superdome that glorious night a wild-eyed special teamer broke through the line, blocked a punt that led to a touchdown and embodied the city’s ascent from the depths of Hurricane Katrina.
“Rebirth” they call the nine-foot statue outside the Superdome, of Gleason’s outstretched body on Sept. 25, 2006, the Saints’ first game in New Orleans since the flood, the death, the anger and the grief.
“We went from losers to winners that night,” says Mayor Mitch Landrieu, sitting next to Gleason on the dais with Louisiana’s lieutenant governor and Mary Matalin and James Carville, the Washington political power couple and New Orleans natives.
“The city found itself again. Luther Vandross has a song called ‘A House is Not a Home.’ Well, we lost all our physical structures as Steve is losing his. But Steve helped us find something inside us that went beyond the physical and manifested itself in a determination.
“Now he has passed football and left it behind and used what’s above and in front of him that is singularly and exponentially greater than anything that might have happened on that field.”
As Gleason spoke through the eye-powered technology, as Chase Bank donated $350,000 to the Team Gleason House for Innovative Living — a brainchild Gleason hatched just a year ago that amazingly has already been erected — reporters in the room broke the unwritten rule of not applauding at news conferences.
We stood. We clapped. And many in the room wept, for a man who couldn’t move his own body or reach out to touch his own child but had managed to move and touch so many others despite battling amyotrophic lateral sclerosis (ALS). He made them pledge money. He made them believe technology could fight this awful disease, give purpose to ALS patients, meaning “artists continuing their art, teachers continuing to teach, architects continuing to design, producers continuing to produce,” Gleason says.
Football players, though, do not play football again.
He retired in 2008 after seven years with the Saints as the fearless special teamer giving his body to the cause. It began with muscle twitches in 2010, graduated to foot drops and then loss of muscle control. When he first had ALS diagnosed in January 2011, Gleason’s first impulse was to tell the doctor to go to hell and the find another physician.
His wife, Michel, didn’t want to believe it either.
“It was denial for me,” she says. “It’s a roulette disease. They test you for spinal injuries, metabolically. And then after they test for everything else they decide you have ALS. I had no idea what this really meant, that there’s no mental behavioral difference. If anything he’s sharper mentally. He knows exactly what’s happening to him. He’s already outlived his original prognosis of two to three years. We need to talk about death because we’re all gonna die. But I expect him to be around for another 20 or 30.”
He is dying of the cruelest disease, one that shuts down his neuromuscular system but keeps his mind open, intellectually lucid, where at home his 15-month-old son Rivers climbs aboard his feet, dad revs the wheelchair until it reaches the beanbag and Rivers falls into a pillow of giggles.
“This process is very difficult,” Gleason says after the news conference, taking between 45 seconds and a minute between questions to transport his thoughts through the voice box. “They say there is a frustration and sadness that only ALS patients can understand. But there is also a love and a joy that only ALS patients can understand. It’s a terribly beautiful disease.”
Terribly beautiful? How?
“I almost cried on the stage just now,” he explains. “ALS causes people to reveal their emotions, whether they like it or not. Which I feel is a beautiful element of the process.”
“We tried to tend to focus on the inspiring because the sad makes it so much harder,” Michel says.
She is a waif of a primary caretaker for her husband, maybe 105 pounds — yet so much stronger than any healthy 350-pound linemen playing Sunday night. She moves his limp body into bed many nights, arranges him just so. She makes Steve a smoothie every day, and an organic company will begin tube-feeding him next week because she says controlling the saliva is getting difficult.
There were times she admitted to wondering what she had done to deserve this, how that 5-foot-11, 216-pound bolt of tenacity she fell in love with is now still, limp, and slurring his speech.
“I’ve definitely had moments of that, but you don’t dwell on it because you could get yourself in a big hole,” she says. “When times come when it’s harder, I’m tired and I get into thinking, ‘how am I going to do this?’ But I remember everything that’s hard for me is harder for him. And that’s how I continue on.”
On the year anniversary of his diagnosis, he went skydiving for the first time. This May he will visit Machu Picchu in Peru.
You want to stop the entire news conference, tell everyone there is no silver lining, that one day Steve Gleason will die too young, and that Rivers won’t watch his father grow old and Michel will lose her husband much too early and, damn it, didn’t football have something to do with this, and why in the hell does anyone play this violent game anyway?
But then the spirit of the city speaks again — “Because ALS is underfunded, patients have had no option but to fade away and die. That is not okay,” he says — and you realize: for all the hope and he gave to a reborn city more than six years ago, Steve Gleason is giving so much more now. He’s right. It’s terribly beautiful.
For previous columns by Mike Wise, visit washingtonpost.com/wise.