A Courageous Fight
- Steve Gleason, 47, a former NFL safety for the New Orleans Saints, has been living with the debilitating neurological disorder ALS for 13 years.
- Without the ability to speak or type, Gleason has used special equipment to write a memoir with his eyes — sharing his highest triumphs, deepest sorrows and everything in between while fighting from the confines of a wheelchair and within his own body.
- ALS, or amyotrophic lateral sclerosis, is also known as Lou Gehrig’s disease named after a New York Yankees baseball player born in the early 1900s. Gleason has described the disease as a “stealer of moments,” as it destroys the body’s motor neurons.
- Doing what brings you the most joy in life can impact your survival, experts say, and Gleason’s story is a reminder of what you can overcome, against all odds.
In a recent interview, Gleason, who released an inspirational film of the same name in 2016, shared his arduous writing process with the New York Times.
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It “took an extraordinary amount of trust,” he added. “It’s clear to me that sharing our shortcomings and weaknesses with each other is our greatest strength. Our salvation.”
“People often talk about ‘writer’s block,’ but I think I experienced something of the opposite thousands of times over the past couple years,” said Gleason. “Ordinary writers may have a wonderful idea to get on the page, then they quickly write it down. But I type slowly that the wonderful idea that was so vivid and clear eventually slipped into the fog as I trudged and typed.”
Adding to the overwhelming experience is grappling with the fact that his work will remain in a “solid, static and fixed” state for eternity.
“I think the most frightening aspect may be that once published, my life story would become solid, static and fixed. That is so crazy to me, because, as a lifelong explorer, my perspectives, philosophical outlooks, and beliefs are dynamic and fluid.”
Steve Gleason’s ALS Diagnosis
Steve Gleason was diagnosed with ALS at age 34 after experiencing muscle twitches in his shoulders, arms, back and legs.
One of the first questions he asked himself in a journal entry, as told to the NYT, was “‘Can I discover peace of mind, even if this disease destroys my body?’ That inquiry has been a guiding light for me the past 13 years.”
One of the books that immensely helped him through at that time was The Good Life: Lessons from the World’s Longest Scientific Study of Happiness, by Robert Waldinger and Marc Schulz, has real-life stories I could relate to, providing insights which have helped illuminate the path for me to live longer, and be grateful and content.”
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Sharing a line that deeply resonates with him, seemingly a metaphor about the complicated relationship with his condition, Gleason quoted:
“‘In the moment when I truly understand my enemy, understand him well enough to defeat him, then in that very moment I also love him.'”
“In embracing this paradox,” the former athlete reflected. “I find strength and compassion in the midst of adversity.”
A second book that resonated with him when he was “losing the ability to move, talk and breathe” is Ender’s Game by Orson Scott Card, with the two themes being “feeling isolation and working to discover my own identity.”
What Is ALS?
ALS, or amyotrophic lateral sclerosis, is also known as Lou Gehrig’s disease named after a New York Yankees baseball player born in the early 1900s.
Gleason has described the disease as a “stealer of moments,” as it destroys the body’s motor neurons.
“It is a disease that destroys most people’s purpose,” the Team Gleason founder explained to the American Speech-Hearing-Association (ASHA). “It can suck away the meaning of life, not only for the person who is diagnosed, but also for families and close loved ones.”
In his quest for living a full life despite the destructive disease, Gleason, who was forced to retire from football in 2008 due to his disease, has found hope through technology. “Most of what ALS takes away, technology can give back,” he said.
Remarkably, over the last decade he has partnered with tech giants Google, Microsoft and Comcast in some innovative missions to help people like him, like a wheelchair that is controlled with his eyes.
Gleason challenged Microsoft to the feat back in 2014 and thus, Ability Drive was born. This sense of purpose has kept Gleason going as he strives to make a difference in all that he pursues out of life.
What Brings You Joy? ‘Do More’ of That
“We know from good studies that emotional health [and] quality of life is associated with survival, meaning better quality of life is associated with better survival, better outcomes,” Dr. Dana Chase, an oncologist at Arizona Oncology, previously told SurvivorNet.
Dr. Dana Chase explains why mindset is so important when facing difficult times
“So working on your emotional health, your physical well-being, your social environment, your emotional well-being, making them better are important and can impact your survival. If that’s related to what activities you do that bring you joy, then you should try to do more of those activities.”
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