Via NY Post
Next door in Conference Room 2, the crowd was sparse by comparison, but the content was more powerful than anything that has or will take place in this hype-a-thon Super Bowl week — and that includes 49ers-Ravens Sunday in the Superdome.
Former Saints defensive back Steve Gleason, in the second year of his battle with ALS, sat quietly at the podium in his specialized wheelchair alongside his former New Orleans teammate Scott Fujita and a number of other supporters to Gleason’s cause.
Using the power of Super Bowl week in his hometown of New Orleans, Gleason — just 35 — introduced the Team Gleason House, which will provide the state-of-the-art technology that allowed Gleason to communicate in yesterday’s press conference.
“What ALS takes away technology can give back,’’ Gleason said yesterday.
He said this not through speech from his mouth, but over a speaker connected to a computer screen that has a keyboard for Gleason to type in his thoughts. Gleason, who no longer has use of his hands, types with his eyes.
The new technology allows ALS patients to lock their eyes on a letter long enough that the computer recognizes it and types it in.
Watching and listening to Gleason speak of this new technology had a profound emotional effect on me. I lost a friend to ALS in June 2011 — Larry O’Rourke, a sports writer colleague who was everybody’s friend.
It was when Larry — whose lifeblood was his social contact with friends — was bed-ridden and on a ventilator, unable to speak or use his hands to communicate with friends via the computer that he asked his parents to turn the switch off and let him die.
If back then — less than two years ago — Larry had use of the advanced technology that Gleason has today and is promoting through his Team Gleason House, he could be here at this Super Bowl live-blogging and Tweeting his humorous musings.
That made speaking to Gleason yesterday both uplifting and sad, because it’s simply not that long ago when Larry faded quietly and died, as Gleason puts it, because of the lack of technology.
In the same way, being around Gleason yesterday invoked conflicting emotions. It’s sad seeing a once active NFL player so weakened by the disease, yet overpoweringly uplifting seeing what he’s doing with it.
“Every morning when he wakes up he always says he’s got to make a choice whether to be depressed and stay in bed or choose happiness,’’ Gleason’s wife, Michel, said. “And every morning he chooses happiness.’’
Long before this courageous public fight of his, Gleason was a hero in New Orleans.
It was his blocked punt early in a Saints rout of the Falcons in September 2005 at the Superdome that brightened lives in New Orleans, because it was the first home game since Hurricane Katrina had ravaged the city and it symbolized that the city was ready to move forward from the death, wreckage and heartache that Katrina’s destruction left behind.
The play was so iconic that it is immortalized in a statue outside the Superdome.
“We are at a similar moment with ALS, similar to the night of the blocked punt, because research is under-funded and under-resourced and patients have no options but to fade away quietly and die, and that is not OK,’’ Gleason said. “With the building of the Team Gleason House, we’re announcing to the world that with right care and right technology patients can be productive for decades. This is an effort that’s bigger than me, bigger than the blocked punt for the city of New Orleans, bigger than football and the Super Bowl.
“This is something that will outlive all of us.’’