by Ron Hoffman, founder and executive director, Compassionate Care ALS
In the course of tending to those with ALS for the last 23 years, I have made some incredible friends. I’m thinking of Sean Lucey and his blossoming spirit, growing stronger even as the physical possibilities in his world diminished. I’m recalling fondly my dear friend Doug Oakley—who kept riding his Harley around North America until he could no longer steer it, and then got a tattoo on his left shoulder that read, “Out of order.”
In and among those thousands is a man named Jim Lester who did scientific research at the peak of Mount Everest, and a woman, Holly Ladd, who was instrumental in protecting the civil rights of those suffering with AIDS. So many beautiful souls, but one among them stands out to me at this moment. He’s the famous contemporary painter, Jon Imber, who continued painting portraits of friends—side-by-side with his artist wife, Jill Hoy—even after his arms stopped working, operating his brush from a sort of holster rigged around his waist.
Jon had been clear early on that he wanted no medical support to prolong his life—no feeding tube and definitely no invasive ventilation. When the time came that he was having difficulty swallowing, Jon and I had a frank and heart-to-heart conversation regarding the choices that faced him. He wanted to know everything I knew, no holds barred.
“Well, Jon, are you ready to go?” I asked him. “Are you ready to die?”
He looked me square in the eye and said:
“No, I’m not done, Ron. I want more color.”
I smiled, looking around at the drying canvases in his art studio, and knew exactly what he meant. “Well then, there’s your decision,” I said. “Get the feeding tube.” It was that simple, that succinct.
What a beautiful way to express one’s love of life. “I want more color.”
It really applies to what we’re going through right now with the COVID-19 pandemic and the world slowly coming out of shutdown and isolation. People are yearning for more color, more bright faces, more laughter, more shared experience in person. And yet we have to be careful. The uninvited one hasn’t finished haunting us. So even as we want more color, we can’t splatter it around like Jackson Pollock. We’ve got to be precise. More like Edward Hopper.
This is especially true for my friends with ALS. Almost all of them want more color but can’t risk getting the virus when their systems are already compromised. I respect this, even though I also want more color, and do my best work live and in person at my friend’s home. Lately, I’ve felt like a call center, tending as best I can over the phone. I can’t even get a massage even though I’ve got a crick in my neck!
So, we do our best to carry on here at Compassionate Care ALS, dropping off equipment at the door instead of bringing it inside, setting it up and demonstrating how it works. We make phone calls, do Facetime, host Zoom events, see people on Skype, send emails upon emails and texts upon texts—and even send letters in the mail. In many ways, we’re busier than ever.
The uninvited guest is still in the homes of our families. ALS isn’t planning to leave anytime soon, though everyone involved would like to throw it out. We want to scream at it, “Haven’t you heard about social distancing?” No, it has not. And so, from my perspective, there’s nothing left but to become inquisitive, welcome it in, say hello, get quiet and listen.
You might just find, as so many of my friends have over the years, that the uninvited guest is an artist in its own way. It’s got some tubes of paint hidden in its pockets. Why not let yourself become a blank canvas, and see what kind of color this unexpected artist has to bring?
To learn more about Ron and the incredible work led by his team at Compassionate Care ALS, visit www.ccals.org.