I had the privilege of meeting Steve Barber and his lively traveling entourage last week. I didn’t get the chance to have a conversation with Steve, but he’s a man I will never forget and I am certainly a better person because our paths crossed.
Steve is living with Amyotrophic Lateral Sclerosis. ALS.
ALS is a neurodegenerative disease in which the body’s motor neurons deteriorate, causing rapid muscle atrophy and paralysis. There is currently no cure for this cruel, debilitating, and unforgiving disease.
I wrote that Steve is living with ALS, and I chose those words very carefully. Steve was diagnosed with ALS in 2004, at the age of 25. Ten years later, I met Steve and his family in Chicago. They made the trip from Ontario by train, because commercial airlines can’t comfortably accommodate Steve and his wheelchair. It’s remarkable that we met at all though, because it’s a minor miracle that Steve is even living today.
The average ALS patient lives only three to five years after the disease begins systematically shutting down the body. Lou Gehrig, whom the disease is popularly named for, lived less than two years after his diagnosis. Steve is part of the 4% of ALS patients who live past ten years with the disease.
It’s not only the fact that Steve is still living that is so inspiring; it’s the way that he’s living. Although ALS has robbed him of all of his motor skills, he hasn’t stopped living life. He still has the urge to travel. His family told me stories of how he plans parts of their vacations, using his computer that is operated by eye-tracking technology. I can’t begin to comprehend how it works. For Steve, it’s his lifeline to the rest of the world – a vital piece of equipment that allows him to communicate and maintain some degree of independence.
In his moving speech, Jim Valvano said that, “Cancer can take away all of my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul.” Jimmy V's words can certainly be said about Steve and how he lives with ALS. They say that the eyes are windows into the soul, but they are so much more than that for Steve. Thanks to eye-tracking technology, his eyes are windows into his mind, into his heart, into his soul, into his entire world.
ALS doesn’t touch a person’s mind, and Steve’s remains sharp ten years after his diagnosis. In Chicago, Steve monitored how things were going at the bar he owns and operates in St. Thomas, Ontario. Somehow, a man who needs help drinking his Bud Light runs a successful bar. I joked with his family that I can’t even hold onto a beer without spilling it. It was funny, because I had just spilled a beer all over the table.
Steve, his family, and his closest friends founded the Believe Army, an organization that raises money and awareness for the ailment that afflicts 350,000 people worldwide. Through various events, the group has brought in significant funds to support the fight against ALS. I am currently fielding my foursome for next year’s 11th Annual Believe Open, the group’s yearly golf event. Serious inquiries only.
I haven’t been nominated to perform the “ice bucket challenge” and I’m not issuing a challenge to any of you. I only hope to raise more awareness for ALS and for Steve’s fight. I want to encourage everyone to make a donation to support ALS research in Steve’s name. The videos and publicity around the challenge have been incredibly effective in raising awareness for ALS, and real dollars are coming in that will hopefully affect change.
To steal from Lou Gehrig’s famous speech: I may not be the luckiest man on the face of the Earth, but I certainly am lucky that I had the honor of meeting Steve Barber.