The crowd grew steadily for the recent opening of a new show by expressionist painter Mel McCuddin at The Art Spirit Gallery in downtown Coeur d’Alene.
Gallery owner Steve Gibbs worked the room as he has for nearly 20 years, greeting friends and customers, catching up. He gripped a cane friends bought him at a garage sale, but even without that visual clue many of those gathered on this warm summer evening knew of his diagnosis.
A fixture of the Lake City’s arts scene, Gibbs has ALS – what Lou Gehrig had, what Steve Gleason has. He noticed muscle twitches in his arms three years ago. More clues of the neuromuscular disease appeared last fall.
Doctors ruled out Parkinson’s disease and in June confirmed it was amyotrophic lateral sclerosis.
The news was crushing, coming just as the 64-year-old Gibbs began taking steps toward a retirement he imagined would be filled with adventure and travel with his life partner, Debi Terracciano, who teaches ballet and tap at her Le Danse Studio.
“There’s a real sadness in that I’ve finally, really hooked up with a partner who I wish I would have met 40 years ago,” Gibbs said recently at his gallery on Sherman Avenue.
“For 19 years I’ve been working for about minimum wage – long hours, never minding it, loving what I’m doing – and still keeping very active skiing and kayaking and camping with my friends,” he said. “But as my friends are retiring and able to do it full time and travel more, I’ve been wanting to go join them.”
Gibbs dreamed of loading their kayaks, mountain bikes or skis into his blue Sprinter van and hitting the road. He thought about gardening, remodeling his house and spending time with Terracciano’s children and grandchildren. He was “really, really excited about the next 10, 20, 30 years.”
Now he’s making plans for the next few months – fitting his van with a wheelchair lift and getting his home ready for his fading independence. Gibbs doesn’t know when his limbs will give out, but he already has lost some motion in his left arm and has noticed a foot flop when he walks. He has fallen a few times and expects he’ll be using a wheelchair within the next few months.
ALS patients experience muscle weakness and wasting, followed by paralysis. Most lose their ability to speak and eventually to breathe freely. Once diagnosed, the average lifespan is two to five years, according to the ALS Association. More than half make it past the third year, and 20 percent live beyond five.
“It’s hard in that Debi is so lovely, and I love her so much,” Gibbs said. “And she’s going to have to go through all this and have the sadness of losing me.”
For now, he is intent on living life to the fullest. Gibbs recently went zip-lining for the first time above Beauty Bay. “I had no fear, I just loved it,” he said. He also squeezed in a late-summer camping and canoeing excursion, with the help of friends/Scott Maben, SR. More here (subscription).