Gleason’s true grit the highlight of Super Bowl 47

One of the most compelling stories of Super Bowl XLVII was the double-edged sword deftly handled by Jack and Jackie Harbaugh, the proud parents of John and Jim Harbaugh, head coaches of the last two NFL teams standing.
 

In a massive meeting room on the second floor of the Morial Convention Center last week, the Harbaugh parents drew an overflow media crowd, and they explained how difficult it would be simultaneously to feel thrilled for their victorious son while seeing their other son’s Super dreams implode.

Just down the hall, a few reporters in a small conference room witnessed something far bigger than the Super Bowl.

Using a computer controlled by his eyes, which lock on to letters of the alphabet for two-tenths of second, former Saints special teamer Steve Gleason spoke clearly and hauntingly about his battle with Lou Gehrig’s Disease (ALS). By “typing” with his eyes, Gleason can trigger his own voice, synthesized from hours of audio recordings he had saved two years ago in advance of losing his ability to speak.

“A few of you look as though you may have had too much fun at the media party last night,” Gleason said, showing his rakish side.

Then Gleason went on to talk about his life since 2006, when he made one of the seminal plays in Saints’ history. On Sept. 25, 2006 – in the first game played at the restored Superdome since the roof was blown off in Katrina – Gleason blocked a punt on the first series of a game against the Atlanta Falcons, and the touchdown that ensued nearly blew another hole in the roof.

“At that moment, we transformed ourselves from losers to winners,” said Mayor Mitch Landrieu. “That singular act transformed the attitude of the city, and from that sports moment, the people of New Orleans said, ‘You know what? We’ve been in the darkness, and now we’re moving to the light.’ And the city found courage and found itself again.”

Gleason and his wife, the former Michel Varisco, have used the last two years to create a purpose for their suffering. They created Team Gleason, a foundation aimed at both creating awareness about the mysterious causes of ALS and finding financial resources and technologies to help those with the disease not simply cope, but thrive.

The Team Gleason House for Innovative Living, with a $350,000 assist from Chase, will be a part of the new St. Margaret Skilled Nursing Residence and help ALS patients use eye-scan technology to open doors, control computers and thermostats, raise or lower the shades in a house.

“What is most impressive about the technology is that it will allow patients to collaborate with peers and colleagues to continue whatever their purpose may be,” Gleason said. “Artists continuing their art, teachers continuing to teach, architects continuing to design, producers continuing to produce. This vision will affect not only the world of ALS but the entire world.”

With his NFL platform, Gleason sees his life’s purpose as being an inspiration. One year after his diagnosis with ALS, he parachuted out of a plane to show it could be done. He was there, with the doctor, catching his newborn son Rivers when he was delivered. He had a pacemaker implanted in his diaphragm to help regulate his breathing.

Gleason’s plan this spring is to go with former Saints linebacker Scott Fujita to scale Machu Picchu, a site in Peru sacred to Incas, which is nearly 8,000 feet above sea level.

“I don’t know how we’re going to do it, but we’re going to do it,” Fujita said. “It’s booked.”

Gleason’s wife Michel is a tiny woman, and she and her parents, Paul and Jill, and two brothers are Gleason’s main caretakers. Michel’s inspiration is seeing her husband on a public stage, fighting not for himself but for others. Still, there are moments of private suffering.

“Lately, I’ve been having more breakdowns than ever, but I think it’s just fatigue and it’s difficult physically and mentally,” Michel Gleason said. “It’s difficult not only to do that work but also to have to see him struggle. But, as Steve says, there’s no point in being negative because we’ve got so much more reason to be positive.”

Does she ever allow herself to become angry at God?

“Like most people who go through something difficult, it’s the alone time when I get it,” Michel said. “I’ll be in the car and scream. But after the scream – after the cry – it’s back to the work at hand. You can’t go home and be like that.”

Paul Varisco said he has been amazed by his daughter and son-in-law and their refusal to ask, “Why me, Lord?”

“They have their moments, but 90 percent of the time, he doesn’t ask that question,” Paul Varisco said. “He asks, ‘How can we find a cure?’ He doesn’t think about the things he can’t do. He thinks about the things he can do.”

And, he loves a good joke. The other day, Michel was having trouble parallel-parking their car in a blinding storm.

“I’m glad I don’t have to do that anymore,” Gleason said.

Peter Finney Jr. can be reached at [email protected]