By Steve Gleason
When I think about individuals who embody a Give a Damn attitude, Steve Gleason certainly comes to mind, and is at the top of my list. Steve Gleason played for the New Orleans Saints NFL football team from 2000 – 2008. He will always be remembered for the punt he blocked against the Atlanta Falcons the night that the Superdome reopened for the first time after Hurricane Katrina. In fact, he became a symbol of the city’s resilience after such a terrible storm. A few years later, Steve was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a terminal neuromuscular disease, otherwise known as Lou Gehrig's disease. Steve has lost so much in terms of physical strength and ability, but his intellect and positive attitude keep him going and make him an inspiration to so many. The blocked punt was significant, but what he is doing for others in the fight against Lou Gehrig's disease is what makes Steve so special.
Often, in the face of such a frightening diagnosis, the only thing that is most important to Steve is his family, and not what he would call a focus on my “self.” He turns inward and focuses on his family rather than being consumed by the daily struggles that come with a serious medical condition. Steve, however, is determined to help find a cure for ALS and also to inspire others by continuing to live his life to the fullest, despite his diagnosis. He has helped to provide countless others suffering from neuromuscular diseases or injuries with cutting edge technology, equipment and services. He partnered with Microsoft to develop a program which allows people to do many things with their eyes, such as drive a wheelchair, control appliances, lights in the house, and much more. As Steve would say, he is not imprisoned by his wheelchair, he is liberated by it. In fact, he will tell you that technology saved his life, and his initiative with technology alone has given others with Lou Gehrig's disease a new purpose and lease on life. He and his friends and family started “Team Gleason” to generate public awareness for ALS, and they continue to raise funds to empower those with Lou Gehrig's disease to live a rewarding life, and ultimately to find a cure.
Steve has been involved in countless initiatives to find a cure and his passion and drive is making great progress. He is the ultimate Give a Damn role model who is using his personal diagnosis and challenges to motivate and inspire others. He sees his situation as an opportunity to inform and inspire people from all walks of life. I recently had the chance to ask Steve some questions about his life experiences and what keeps him going toward helping others. He typed his responses to the questions below, by using the motion of his eyes. As Steve said, “I type with my eyes. So if what I say in my answers sounds crazy, they probably are.” And I would say to that: “Those who are crazy enough to change the world, are usually the ones who do.”
Question 1: Given the many principles expressed in this book, how have they had an influence not only on your upbringing, your professional football career but also the battle with your medical condition? How have you changed or transitioned as a person over the years?
Steve: Growing up, I think the principle that most influenced me was the concept that, the best way to help yourself is to first serve and help others. I do not think this is as being “totally selfless,” instead I call it “self interest.” The concept was instilled in me by my parents and the high school I went to – Gonzaga Prep. Despite my ALS diagnosis and the challenges I have had to face, I knew I wanted to continue to live a productive life, so I set out to help others do that same thing with their lives.
Question 2: How have your (what I would refer to as Give A Damn) principles had an influence on the inspiration and public management of your illness?
Steve: With the public management of my diagnosis, it is not about me. It’s more about OUR public management because with ALS, and like most other illnesses, it affects the entire family. With our family’s management of ALS constantly in the public lens, I believe the most important principle that we followed was being open, honest, and forthcoming about our struggles, our pain, and our vulnerabilities.
Everyone experiences suffering at some point in their life. It’s the most real part of our human existence. We could potentially replace, “I think therefore I am,” with “I suffer therefore I am.” Despite this common thread that links us in our existence, we rarely share our weakness with each other. Our family’s choice was to share our struggles, as well as our triumphs publicly because I believe it will help other people see themselves in us in some way.
Question 3: How have these principles had an influence on the Team Gleason foundation and your philanthropic goals and how has it made you feel?
Steve: With all the love and support that I have received from family and friends, despite my ALS diagnosis, I have been able to find a way to lead a productive and purposeful life by helping others as best I can. Despite so many challenges, I feel like I’ve been able to conquer ALS. Our foundation (Team Gleason) and the resulting philanthropic venture (Answer ALS), allows us to help others live triumphant and meaningful lives – to be fellow conquerors; instead of being forced to fade away and die a silent death. Together we (as you would say – Give A Damn) are empowering families to overcome the injustice of ALS. Most importantly, we’re taking positive steps toward our ultimate goal – Ending ALS.
Question 4: After everything that you have been through, what keeps you going?
Steve: Despite the abundant struggles that many people face in life, I’ve been able to find meaning and a purpose in life. I believe that all humans seek to live a productive, purposeful life, yet few truly find this. Purpose and meaning keep me going. I have no intention to “hang in there” or “survive.” I intend to keep living a purposeful, productive life, and do what I love.
NO WHITE FLAGS!
PS Thanks Mark. Nice work.
I do not have a medical degree, nor do I have a background in science or psychology.