By Joe Hadsall
Globe Features Editor
JOPLIN, Mo. —
Amyotrophic lateral sclerosis, aka ALS or Lou Gehrig's disease, is a neurodegenerative disease that attacks nerve cells in the spinal cord and brain. According to Steve Gleason, it prevents the brain from talking to muscles, and as a result, the muscles die.
Gleason should know. He has the disease. The diagnosis is normally a death sentence of two to five years.
In a guest column for Sports Illustrated, he wrote that it doesn't affect senses such as hearing, taste or touch. Even though he can't reach out and hold a hand, he can feel when someone holds his hand. That raises the question: How did he write a 4,500-word column if he can't move his hands?
With his eyes: Gleason uses a high-tech rig of a tablet computer and eye-tracking. By looking at certain parts of the screen, he can mimic mouse commands. He can "type" 20 words a minute.
He also talks with computer aid, similar to physicist Stephen Hawking, who also has a motor neuron disease. His voice, once powerful yet casual with a West Coast lilt, now sounds like a male version of Siri. There is no cure for the disease, and the cause is unknown.
Since his diagnosis in 2011, he and his wife, Michel, decided to fight the disease and live with it. Through the Team Gleason foundation, he has worked to reduce the cost of equipment that enhances -- and possibly extends -- the lives of ALS patients.
Gleason is a former player for the New Orleans Saints. He is best known for one magnificent play that has enshrined him into Who Dat sainthood. His blocked punt against the Atlanta Falcons in the Superdome on Sept. 25, 2006, is viewed as a keystone moment in the team's history, and for the recovery of New Orleans after Hurricane Katrina.
I watched that play occur on the tiny TV screens of The Joplin Globe newsroom. After a summer of uncertainty and heart-sickness for the city where I was born, the game made a great symbol of life getting back to normal.
And that block felt even more symbolic. I fought tears -- actually, it wasn't the touchdown that made me cry. It was the reaction of the fans. Even though I listened to that crowd through a small speaker on a small TV, it shook my ears just as strongly as being there live.
When Gleason was diagnosed with ALS, my heart broke again. I was inspired by how he decided to fight the disease through his "No White Flags" effort, but sickened when I saw his condition deteriorate.
Calling Gleason a sacred cow is an understatement for Saints fans. He is revered, adored, canonized and lionized. There's a statue of that blocked punt outside the Superdome with the title "Rebirth."
So when three DJs at an Atlanta sports talk station did a "comedy" bit impersonating Gleason's mechanical voice, I was incensed. Insulted. Ticked off. I took part in the rage explosion on Twitter and Facebook.
I was conflicted, actually. The bit, which featured mean-spirited, witless, unfunny knock-knock jokes about how Gleason could die at any time (one of the jokes ended with the punch line "smother me and put me out of my misery"), was in bad taste. But it was just crap on a sports talk station in Atlanta.
And it had given me a great idea for this column: To talk about humor, when it goes too far and what freedom of speech really means. I had a Patton Oswalt reference ready and plenty of trash-talk for fans of the Saints' No. 1 rival.
But because of Gleason's response, I'm changing tactics. Gleason responded to the firing of the three hosts by forgiving them and hoping the situation raises more awareness about ALS.
"It's clear to me that, on a national and global scale, ALS is not understood, which is part of why it's underfunded and largely ignored," he wrote Tuesday with his eyes. "If you take any action as a result of this event, I prefer it to be action to end ALS."
After writing this column, I donated some money to Team Gleason. They'll use it to raise even more awareness of this disease, enhance the lives of patients and work for a cure.
I hope my readers can consider doing the same. But if readers talk more about what ALS is and how Gleason fights it in a way that impresses and inspires me -- a tornado victim prone to apathy, depression and hopelessness -- and less about what ding-dongs those shock jocks were, then mission accomplished.