KINDRED SPIRITS

by Carol Owens Campbell, IL

If there is an image of ALS that connects Lou Gehrig in 1939 to Ben Byer in 2002, an image that helps those of us who have not been diagnosed with ALS better understand those of us who have, what would it be? If there is a metaphor that connects public faces of ALS such as Lou Gehrig, Jim “Catfish” Hunter, Stephen Hawking, Lane Smith, Senator Jacob Javits, David Niven, Morrie Schwartz, Ben Byer and others to their less public kindred spirits experiencing ALS, what would it be?

In a quest to find such an image, I asked my friend, Barbara Byer, mother of ALS film pioneer Ben Byer, how she would explain ALS to a child. Barbara, a mother of five and grandmother of nine with a master's degree in Early Childhood Development, answered, “I guess I'd say that while a child grows up and keeps gaining skills, an ALS patient 'grows down' and keeps losing skills.”

Impressed, I then asked, “So, how would you explain what it must feel like to have ALS?” Barbara didn't hesitate. “With ALS the progression of the disease keeps speeding up; you're always readjusting to new losses. You know you're losing your functions but you can't stop it. It's like a runaway train.” A runaway train. A universal image that ironically honors both the past and present of individuals diagnosed with ALS.

After all, Lou Gehrig, the first high-profile person diagnosed with ALS in 1939, the man whose name is forever associated with the disease, earned his nickname, “The Iron Horse,” because his baseball skills evoked images of a strong, sleek, speeding train. However, once Gehrig began exhibiting symptoms of ALS at age 36, unable to hit home runs, unable to continue his consecutive game streak and forced to bid farewell to his profession, it was as if this beloved “Iron Horse” disappeared into a tunnel, never to be seen again.

Ben Byer, diagnosed with ALS in 2002, decided to hop on a different runaway train. Although Ben's speeding ALS train rushed through long, winding, claustrophobic tunnels, Ben emerged again and again into bright sunshine on the other side. Even in tunnels when he experienced some of his darkest moments, Ben focused cameras on himself to illuminate his ALS experience. Ben's train traveled the world. In America, China, Jamaica, Israel, Greece, Ben was visible as a man surviving, even thriving, in spite of ALS. Ben not only stayed visible, he put his life, his struggles, his tears, his nakedness, his doubts, his anger, his humor, his fears, his relationships, his parenting, his physical challenges, and his progression of ALS in his film, “Indestructible,” for all to witness.

Ben's father, Stephen Byer, makes the observation that ALS patients often disappear because ALS is so physically, emotionally, mentally and spiritually isolating. ALS can be “spiritually isolating” to a person with a brilliant mind and a vital, vibrant spirit as he or she struggles to maintain sanity and integrity in the midst of able-bodied others.

On July 4th, 2009, the 70th anniversary of Lou Gehrig's last words to his fans, the “Iron Horse” will be remembered for saying, “I'm the luckiest man on the face of the earth.” Lou Gehrig wasn't referring to ALS. He was referring to his friends, fans and family.

On July 3rd, 2009, the first anniversary of Ben Byer's death, those of us who have seen Ben's award-winning film “Indestructible” may remember his words to Annie Poupalias, the beautiful woman in Greece whose runaway train was speeding at a faster pace than Ben's at that time. As Ben nestled beside her on the sofa ~ as Annie and Ben emerged into the sunny warmth of recognition, visibility and camaraderie ~ Ben's words to Annie offer a profound truth to all who share a deep bond with another person, including those of us who have ALS and those of us who don't. As Ben said upon finding a kindred spirit in Annie, “For a while I felt I was the only one.”