Benefitting Team Gleason
Former NFL football player Steve Gleason founded a charity, Team Gleason, helped create the largest ALS research project in history, has a Congressional Gold Medal, 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.
BONUS! To read Steve’s post-diagnosis letter to friends and family, check out the trailer for the documentary film, GLEASON, and watch the 2014 Super Bowl Commercial he starred in, scroll to the end!
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)
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)
Steve’s open letter upon receiving his ALS diagnosis which is referenced in the interview:
Let's get to it. Yesterday I met with one of the best Amyotrophic Lateral Sclerosis (ALS) physicians in the world and he diagnosed me with ALS.
I have spoken with everyone on this email chain in the last few weeks so I think most know the 'deal'. Below is a YouTube link. If it doesn't work search ABC of ALS. It is 3 parts and a total of 60 minutes. I don't expect you to watch but the 'deal' is that nearly all diagnosis are terminal (our doctor mentioned 3 cases of conditions stabilizing) the average lifespan is 2-5 years post diagnosis. Which puts a slight detour in my plan to live to 109.
As most of you know I have also met with Boston University's CTE research center. They have a theory that head trauma in sports can be a causative factor in ALS. If you don't know about CTE and football read the sports illustrated from a couple months ago. CTEM is really the same thing as ALS with the same outcome so I won't waste anymore keystrokes on discussing it.
I intended to write some inspiring piece about staying optimistic and beating this diagnosis with the same determination and persistence that kept me in the NFL. People like hearing that. Deep down inside myself, I believe that is true.
I want to be honest with you... I am very scared and frustrated. I don't feel like beating anything. I don't feel like doing anything or keeping my chin up or calling more doctors or taking prescription drugs or joining a support group or figuring out health insurance or revising my will or going to church or being blessed by the pope (or the pipe) or wearing magnets or eating bird food or 'clearing' chakras.
I feel like being depressed. And I feel like crying. And I feel like kicking someone’s teeth in or having my own teeth kicked in. I feel like pinching myself and waking up. I feel like screaming. I feel like flipping God the finger. I feel like feeling sorry for myself. I feel like running away to the moon.
You see, in reality, our bodies are saucy meat sacks that breakdown and die. Fighting and persevering, and persisting and determining and optimistic-ing, and chin up-ing doesn't work for everyone
But... At least 3 times it has worked. So, feeling better about being honest with the few of you who are on this email, I promise to fight and believe and expect the extraordinary and smile and laugh and cry and love our lives for every breath that remains in my body. Please, please help me do that... until I'm 109.