SPOKANE, Wash. – It was six years ago Spokane native and former NFL star, Steve Gleason, was diagnosed with ALS.
Since then, Gleason has worked to help others live fully despite similar diagnosis. On the anniversary of that diagnosis that robbed Gleason of virtually all movement, he wanted you to know he loves his life and hopes his story will help you remember to love your life too.
“I feel purposeful and fulfilled with where I am,” Gleason said in an audio file he sent to KREM 2 News. “I’m excited about what is ahead.”
This is not to say that Gleason always felt that way about his sometimes brutally painful journey.
“There were days in the past when I was so frustrated and hopeless, I felt death might be a welcome alternative to this life. Those hopeless days are behind me,” he said.
In a note posted on his Twitter account Thursday, Gleason shared his thoughts on the incurable disease that robs him of ability to move.
"I know ALS is a remorseless and humiliating disease," he wrote. "It can leave its victims in a pathetic, silent, purposeless heap of flesh. It can annihilate families. Spouses become unrecognizable to each other, veiled in frustration, anger, and shame."
In the midst of adversity, Gleason found purpose pouring his energy into Team Gleason. Among other things, his non-profit organization helps people with similar diagnosis continue crucial communication through technology.
Gleason and his wife Michel also used technology to preserve memories of their journey for their young son, Rivers. They soon realized their intimate family footage might benefit an audience beyond the three of them.
“We thought our situation, which we had filmed so honestly for our son Rivers, could benefit any person who has experience life’s adversity,” Gleason said.
That desire grew into “Gleason” the brutally honest documentary that premiered at the Sundance Film Festival.
I think people want to go see @gleasonmovie this weekend, but are a bit hesitant. I have this message for them:
— Steve Gleason (@TeamGleason) August 12, 2016
-SG pic.twitter.com/uiCyWT9Lzo
Michel said over the summer while it was important for them to be transparent in the movie, it was not easy to lift the curtain.
“Steve and I were both super apprehensive going into Sundance,” she said. “You know, what are we doing? What are we doing this for? This is crazy. We’re about to show this whole room of people this movie and it’s our lives.”
The documentary has gone on to win several awards and now sits on the short list for a potential Academy Award nomination.
Gleason said he has remained active in his son's life and does not let ALS keep him from doing what he loves.
"I pick [Rivers] up from school every day. I do lunch duty twice a month. I go to all his practices, and help put him to sleep at night," he wrote.
There is no cure for ALS but Gleason said he hopes that with the help of generous donors and other technology firms that Team Gleason will be able to provide the resources for others to be fellow conquerors.
"While I intend to continue living a meaningful life for decades, I understand that my timeline is fragile, just like you," he wrote.
"I don't pray for a life without suffering, I pray for the strength to understand, while living triumphantly above the suffering."
Gleason ended his note with the same message he began it with.
“Six years after being handed a terminal diagnosis know this,” Gleason said, “I am happy.”
Six years ago today, I was diagnosed with ALS. Here are my thoughts:
— Steve Gleason (@TeamGleason) January 6, 2017
-SG
"... I am happy." pic.twitter.com/yTV6Ad9fqi