You're all certainly aware of Steve Gleason's battle with amyotrophic lateral sclerosis (ALS), and the presence of the Super Bowl this week in New Orleans -- where Gleason spent the entirety of his NFL career and now makes his home -- has allowed Gleason to full advantage by putting the disease center stage.
Although the disease has taken away the use of his vocal cords, Gleason doesn't let that stop him from speaking, as he did at an event to announce the Team Gleason House For Innovative Living, which opens next month. It's going to be a wing at St. Margaret’s Hospital in New Orleans in which patients will be able to manipulate their surroundings (open doors, change the temperature, etc.) with their eyes.
And it's Gleason's eyes that allow him to continue to "talk," as Bruce Arthur (hands down one of the best writers in North America) describes so eloquently in his story. A special laptop turns Gleason's eye movements into words -- words in his voice that he recorded months ago, before he could no longer speak on his own.
As part of the event, Gleason took some questions and answered with his laptop as only he can. Like this.
Hey, Steve: What's the most humbling part of having ALS?
"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.
Personally, I would've thought it would be having someone wipe your ass. But leave it to Gleason to take the road less traveled.
Because that's what he always does.
"A terminal diagnosis can really mess with your head," he said through the computer. "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."
Also do yourself a favor and read this story by Gregg Doyel from the same news conference. You'll be glad you did.