Former Cougar Gleason tackles ALS head-on
About a year ago, Steve Gleason paid a call on his old position coach at Bill Doba’s retirement man cave on the shores of Birch Lake in Michigan.
There were hugs and talk and stories and a steak dinner and more stories into the night. And the next morning, Gleason came down for breakfast and half-apologized for not being the perfect houseguest.
“I didn’t make my bed,” he told Doba. “I’d rather spend 45 minutes with you than trying to make that damned bed.”
This was time management both pragmatic and tender.
And, yes, heartbreaking.
Once Steve Gleason was a foot soldier who helped change, for a slice of history, the face of football at Washington State University. After that, he was a cult figure in his adopted home of New Orleans, both for some kamikaze football heroics and a lifestyle that connected him with the community in ways few athletes ever are. Barely had he taken off his football uniform than he was diagnosed with amyotrophic lateral sclerosis – ALS – and made his affliction not just public but prominent, because that’s what could do the most good.
Now he’s a warrior for time, not merely his own.
That brought him to The Golf Club at Black Rock up above Lake Coeur d’Alene on Monday for a wingding in which he could find some humor, being as one of his early mandates to the worker bees at his foundation was this:
“No galas and golf tournaments,” he insisted.
Not his style. He’d always been more of a rock concert – or rock climbing – kind of a guy.
That this turned out to be the right exception is a bold understatement. The tournament sold out its 200 spots – at $1,000 per – and had raised more than $300,000 before lunch was served Monday afternoon. And not because it was a big celebrity deal. Yes, Black Rock member John Elway played, and a few old Cougs and Zags, but it was pretty clear the draw was the guy who couldn’t swing a club and his up-to-the-eyeballs investment in his causes – multiple in this case.
For instance, WSU and Gonzaga Prep received some scholarship money, too – though not for athletics, but for students with family members battling ALS.
Gleason’s own battle is more arduous than ever. Upwards of 95 percent of his days are now spent in a wheelchair, and while he still has the use of his left hand to guide it and text messages, how long those functions remain is unclear.
So urgency always seems to be a companion. On the ALS front, that has spawned two missions – one that requires some real money.
Gleason is partnering with a group in New Orleans to build just the second ALS “house” in the nation – a facility folded into a new nursing home being built that will be home to 8-16 patients. It’s the foundation’s task to outfit the place with the leading-edge technology that allows ALS patients to be fully functional, operating the household basics – lights, appliances, drapes, TV, laptops – with eye commands.
“There’s one in Boston,” said Paul Varisco, Gleason’s father in law, “and it’s transformed people’s lives. Until a cure is found, technology is the cure.”
Until that can become a reality, Gleason focuses on one life at a time. His foundation has funded what he calls “adventures” for a number of ALS sufferers to drive home the message there is still life to be lived. As the first shotgun start went off Monday, for instance, there was an ALS patient in a hot air balloon over Tuscany, his trip to see distant family in Italy having been funded by the foundation.
This is at the soul of Gleason’s fight.
“With the right equipment and technology – and most importantly, sense of purpose,” he said, “patients with ALS can live for decades, which is not the timeline you’re given upon diagnosis. So how can we keep doing the things we love – which is often adventure and travel?
“But I don’t want this to be – although they do great work – like the Make-A-Wish Foundation. I don’t want this to be a white flag. I want us to help provide a sense of purpose for these patients.”
But he wouldn’t be Steve Gleason if ALS were his only cause. Just last week, he posted a remarkable letter to a Facebook site created to support newspaper staffers at the New Orleans Times-Picayune, half of whom lost their jobs in yet another body blow to an industry battling its own disease.
He had no new solaces, but unflinching encouragement and necessary perspective.
“As someone who’s lost most of his physical abilities over the past 20 months,” he wrote, “I can tell you that the anticipation of loss is worse than the actual loss itself.”
Time is better spent, he reasoned, manufacturing a gain.
In fact, that’s all the time Steve Gleason has.