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.
