Anyone who has done the Ice Bucket Challenge — a nation-sweeping fundraiser for those with ALS — knows that the hard part only lasts a few seconds. The sudden, bracing rush of water. The ice tumbling off your head and shoulders. The shock and shiver.
But for those who actually have the devastating neurological disease (its full name is amyotrophic lateral sclerosis) the hard part stretches and steals over years. Muscular degeneration, the loss of speech.
And that seems especially cruel for Steve Gleason, 37, a Spokane native and former NFL safety who made his mark at Washington State University, played for the Indianapolis Colts and then the New Orleans Saints, retired in 2008 and revealed his diagnosis in 2011.
But ALS didn’t stop Gleason from taking part in the fundraiser, in which people dump a bucket of ice water over their heads and post a video online, challenging three friends to do the same within 24 hours, or send $100 to the ALS Association.
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Gleason even did the challenge naked, “Because everything is better when you’re naked,” he said on his video.
Then he got a look at the bucket.
“OK, maybe not everything.”
A few days later, Gleason agreed to answer a few questions about the impact of the Ice Bucket Challenge.
This was no easy task.
Gleason is only able to communicate through the use of eye-tracking technology. Using a tablet computer mounted on his wheelchair, he moves his eyes to select each letter for each word in each sentence, which is then spoken by a computer voice.
It is painstaking and exhausting.
But it was important for Gleason to talk about the impact that the Ice Bucket Challenge has had on fundraising and awareness of ALS (often called Lou Gehrig’s disease).
First, though: How did the ice feel?
“It’s invigorating,” Gleason said via email. “I love it. Cold plunges are a big part of most athletes’ routines, and I have continued to do hot/cold hydrotherapy as a ritual.
“It’s great for my circulation, and my mental outlook. So, I’ve been doing this for nearly 20 years.”
In fact, he said, he took his friend Pearl Jam guitarist Mike McCready to the Saints facility in New Orleans last year for an ice bath.
“He was initiated in the ritual,” Gleason said.
He first heard about the challenge — started by former Boston College baseball captain and ALS patient Pete Frates — on Twitter.
“It was hard to miss,” Gleason said.
It spread like wildfire across culture and politics, backyards and boardrooms. Jimmy Fallon and The Roots did it. So did Martha Stewart and Oprah, who looked none too pleased with the experience.
Bill Gates came out with a perfectly produced video of himself using a self-pouring bucket contraption on his Lake Washington dock.
“Genius,” Gleason said. “But then again, it was Bill Gates.”
Microsoft CEO Satya Nadella name-checked Gleason several times in his video, praising Gleason’s embrace of technology to manage the effects of ALS. (Gleason appeared in a Microsoft Super Bowl commercial centered on how technology empowers people).
“(Nadella) floored me by saying I have helped inspire innovation,” Gleason said. “But then again, it was Satya Nadella.”
Gleason couldn’t begin to name a favorite video, he said, “Because there are so many. I’m honored some of my good friends did the challenge in my name.”
Among them: Former NFL player Scott Fujita. McCready and his bandmate, Eddie Vedder. New Orleans Saints quarterback Drew Brees.
Gleason first met Frates in June 2013, when he came to New Orleans for Gleason’s Team Gleason Summit, where scientists, clinicians, people living with ALS, their families and caregivers gathered to seek ways to fast-track new treatments for the disease.
Last November, Frates joined Gleason at the Voodoo Music + Arts Experience in New Orleans, where Gleason introduced Pearl Jam and wrote their set list for the night.
“We took (Frates) onstage, and he got to meet the band just before the show,” Gleason said. “Pete is an incredible guy, and I am so proud of him.”
Indeed, as of last Aug. 19, the ALS Association had received $22.9 million in “Ice Bucket” donations — double what it had reported in donations just three days before.
And consider: At the same time period last year (July 29 to Aug. 19), the association had received $1.9 million in donations.
“We see thousands of people participating,” Gleason said, “and it’s raised more awareness of the disease than anything in the history of ALS since Lou Gehrig’s announcement 75 years ago.”
Someone in the U.S. dies every 90 minutes from ALS, he said, and globally, the numbers are even more staggering.
“Contrary to what Lou Gehrig said, ALS patients are not in any way lucky,” Gleason continued. “It’s a silent, brutal, and until now an anonymous death. There is still no treatment or cure.
“So, my advice is to pour ice over your head, donate, learn, share and care for someone with ALS.”
Gleason was headed to Spokane to oversee his annual “Gleason Fest,” an indie-music festival that raises money for The Gleason Initiative Foundation, which helps provide those with muscular diseases or injuries with technology, equipment and services.
No matter what the disease has taken from him, Gleason continues to give his all.
“I’m just trying to live with passion and purpose,” he said. “I believe with the right technology, equipment and support, people with ALS can continue to live with purpose.”
Nicole Brodeur: firstname.lastname@example.org.