Former NFL football player Steve Gleason founded a charity, Team Gleason, helped create the largest ALS research project in history, has a congressional medal of honor, a law passed in his name and is the star of a Super Bowl commercial and film about his life. Most importantly, he is a proud father of two kids -- Rivers and Gray. Steve accomplished all of the above and more while unable to walk, talk, eat or breath on his own. Steve shared his story with ALL THE WISER while typing with his eyes. He recorded and banked his vocabulary to preserve his authentic voice which you will hear in his candid interview on finding his purpose, the pitfalls of being called a hero, his insecurities, hope for his children and the things he misses most about his life before ALS.

 

In Today’s Episode:

• Being told he will be dead in 2-3 years (3:58)
• Losing his ability to walk and talk (5:54)
• A day in his life 8 years after being told he would not live (10:02)
• How to live a meaningful life with ALS (13:52)
• How ALS affects families (20:27)
• Why he believes technology saved his life (22:42)
• A trip to space and changing the the future of ALS with virtual reality and artificial intelligence (31:13)

Wise Words:

• Would I spend all my time left, would I spend the time searching for ways to be cured, or would I try to do whatever I really wanted to check off the bucket list? (4:50)
• People with nothing left to lose have nowhere to go but up. (9:48)
• As someone who’s lost most of his physical abilities over the past 20 months, I can tell you that the anticipation of loss is worse than the actual loss itself. (15:06)
• ALS is a remorseless and humiliating disease. It can annihilate families. Spouses become unrecognizable to each other, veiled in frustration, anger and shame. Michel and me included, life begins to unravel into chaos as the person with ALS becomes more reliant on their spouse, and before anyone realizes it, frustration and resentment and shame end up clouding the entire relationship. (20:27)
• It’s really true for all relationships. If you can’t communicate honestly and if you can’t have compassion for the other person’s pain, you have no relationship. But ALS magnifies and intensifies that principle. Michel and I were in the low point. Our breaking point. Fortunately we found a way to thaw the ice, start communicating openly, and understand each other. Things are very different than before I was diagnosed and we definitely struggle, but we’re in a good place. We communicate well and we’re a tightly forged team. (21:20)
• I’ve thought a lot about suffering, and I notice it doesn’t matter whether you are poor or wealthy, white or black, talented or untalented. It doesn’t matter if you have ALS or not. Every human experiences suffering, and some people who have any type of chemical imbalance or mental illness, they suffer mightily to stay positive. Every human experiences suffering. While I’m not saying we should complain all the time, it’s our most powerful tool as humans to share our pain and vulnerabilities with each other. (27:11)
• I rarely get caught up in the things that I cannot do. I suppose that means that I’m either really stubborn or I like to think that if a person can find the way to live a fulfilling and meaningful life, things like walking around or talking far and away is less important to a person if they can feel they are making an impact in other ways. (28:13)

Links Mentioned:

• Steve’s Charity: http://www.teamgleason.org/

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