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Steve Gleason, ALS and a Super Bowl story worth paying attention to

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You might've missed it in the run-up to the Super Bowl, but you really should be paying attention to the work Steve Gleason is doing.

Derick E. Hingle-US PRESSWIRE

Of all the storylines swirling around as the Super Bowl gets set to begin, the best -- and most heartbreaking -- may be one that has nothing to do with the San Francisco 49ers or Baltimore Ravens. This is, in some ways, Steve Gleason's week, with the Super Bowl in his town and in the dome that he'll forever be a part of. His likeness is outside in statue form, capturing a moment that was more about city than sport -- the blocked punt that occurred in the first game back in New Orleans following Hurricane Katrina forever immortalized.

I have a special admiration for Gleason, and not necessarily because of anything he's done on the field. He's one of "my guys" -- an alum of Washington State, where he was an undersized firecracker of a linebacker that easily endeared himself to fans. What he's doing now has little to do with football, but hopefully will have a long-lasting impact that goes well above and beyond the game.

By now, most know that Gleason has ALS. He was diagnosed just about two years ago after feeling some odd twitches. Doctors searched and searched for the root cause before coming back to him with the terminal diagnosis in 2011. To see him then and now is striking.

A year ago, much of the world was introduced to Gleason. Peter King's powerful feature on Gleason, ALS and the Saints ran during the pregame show, giving the story some much deserved publicity. If you haven't seen it, watch it again.

It was at the end of the feature that Gleason's wife, Michel, broke down into tears, pleading for ALS to spare Steve's voice. The disease essentially leaves its victims trapped in their own heads, muscles deteriorating on the outside while the mind remains strong. Gleason was already speaking in labored tones -- a sign that his health continued to slide at a quick pace.

His voice is gone now, or at least gone in theory. Gleason is confined to a wheelchair, where he uses a computer to speak. But before he lost his voice, he recorded sounds and words in an effort to be able to speak in a way that was at least somewhat familiar and similar to how he had before. He's still getting used to the machine, and it takes time to train his eyes to letters while forming sentences, but Gleason keeps pushing along.

Gleason's story is heartbreaking, sure. But it's also pretty damn incredible. He was blindsided by a terminal diagnosis and decided to fight -- to do something about it. Of course, he lived life to its fullest before ALS took his motor skills, but at the same time Gleason has used his stature and status for good.

I know a hell of a lot more about ALS than I did two years ago, and it's all because of Gleason and his charity, Team Gleason. That's important, and the first step towards maybe -- hopefully -- finding a cure. Or at least finding a way to prolong the lives of ALS patients while allowing them to, like Gleason, live life to its fullest.

As Bruce Arthur wrote earlier this week, after Steve Gleason Day in the media center, Gleason refuses to go quietly. That's not how he is, not how he's ever been.

"Honestly, it makes you want to run away to the moon. I believe ALS research is underfunded and under-resourced. Many ALS patients end up fading away quietly and dying. For me, this was not OK. I did not want to fade away quietly."

Gleason captivated the room, even as he struggled to perform functions most take for granted on a daily basis -- taking a sip of a drink, speaking, being able to move about freely. But when he speaks, it's worth stopping to listen. You'll come away with a greater appreciation for life, and you'll learn something in the process.

About a year and a half ago, before the effects of ALS truly took hold, Gleason visited Pullman again. He came on a football weekend and made the rounds on campus -- and exhausting and rewarding few days. Every player I spoke too called him an inspiration, praising his outlook on life and attitude. Like he did this week, Gleason held court in front of a small group of reporters, captivating them as he spoke.

This is what he does. This is what he'll continue to do until ALS becomes too much and he passes away. He will be loud and won't be slinking away from the spotlight, or from ALS. He's going to make the lives of those dealing with ALS better -- even if only for a few moments -- because that's how Gleason is.

If you take anything away from Super Bowl week in New Orleans, it should be the story of Steve Gleason, the battle he's fighting, and the cause he's raising awareness for. It's not Ray Lewis, Colin Kaepernick, or anything to do with the game. But it's important -- it's more than sports and a cause worth fighting for.

I don't know what the future holds for Gleason, but it's a scary future. In two years, most of his motor skills have faded, yet he's remained strong. He knows he has a limited time on this Earth and will continue to make the most of it.

And by the way, his humor is still completely intact. It's not going anywhere either.

"What is most humbling, you ask," he said. "To be honest, having someone else wash my balls."

The room dissolved in laughter. Gleason smiled and locked his eyes on the keyboard as the laughter washed over him.

"Anything else?" he asked, and the laughter redoubled. Fujita decided he could stop it then and there.