A few weeks before Thanksgiving, my son Jackson and I were sitting quietly in a medical examining room with a small bed, a computer, a sink, and two chairs crammed into the remaining space. The physician, whom I had just called “a great doctor” and received the corroborating reply “I don’t know about that,” had left the room. We were waiting for two nurses to come in.
Beside me was a motorized wheelchair. The doctor had given it to us for as long as needed. This visit was to let us know, after months of hemming and hawing by other neurologists, that complete test results were finally in, and the most likely cause of Jack’s increasing difficulty walking was ALS, amyotrophic lateral sclerosis, Lou Gehrig’s disease.
It is a rare neurodegenerative disorder with severe motor symptoms that only worsen. Sometimes its cause involves a gene mutation, and this has been treated experimentally with positive results. But Jack’s tests showed he does not have the mutated gene. There is no cure. Jack is not going to live a lot longer. In the meantime, his body and life are going to wither.
Soon the nurses came in. They explained how they are going to help Jack, and me. They demonstrated again how the wheelchair works. They said again and again that we should call them with any questions. Their smiles were authentic and encouraging despite the facts on the ground. They will be Jack’s guides through hell. I tried to express how grateful I felt about this, but failed.
They had a gift card for $200, which is offered to patients to do with as they please, funded by donations to this ALS clinic in Brunswick. When the nurse handed over the envelope with the card, Jack lost his composure and began to sob. This went on for a few minutes. The nurses hugged him. I hugged him. I struggled to keep my own composure.
I knew Jack’s emotion had nothing to do with $200. What touched him were the fact his life is closing down at the age of 34; that he’ll never play his guitars again; that he has only a short time left to love his close-bound 8-year-old son Silas; that soon he will be unable to look after himself; the finality of the gesture. And all this, I knew, was subsumed by the compassion directed to him. Not the money, not the gesture, not even the loss, but compassion directly in the face of hell overwhelmed him.
The nurses clearly don’t do this heartbreaking work for just money. The neurologist who runs the clinic is a great doctor partly because he knows and administers his science better than any other neurologist we saw, but also because he was clearly not doing it just for money. These people make their livelihoods out of compassion. This is extremely painful work. It is something to be grateful for, even though its depth can’t be articulated.
Jack’s mom, Bonnie, came to the end of a five-year ordeal with breast cancer about two years ago, just before Jack began to limp. At the time, her brother John set up an online fundraiser to help us with the inhumane costs of medical and other care. The outpouring of donations was humbling. Bonnie’s high school students from two decades offered testimony of their love of her, and by some kind of recursive emotional arithmetic, her love of them. The most heart-touching donations were of five dollars. It’s hard to say how deeply we appreciated, not the money—which, make no mistake, helped—but the emotional, moral, and spiritual magnanimity of so many people together. The collective compassion.
In the face of Jack’s illness, John persuaded us to let him start another GoFundMe page. The outpouring has again been staggering. People I know have given thousands of dollars. People I know only distantly, hundreds and hundreds. Three girlfriends from forty-plus years ago, when my own behavior could not have prompted positive karma of any kind, called, emailed, donated. An agnostic friend of 50 years who lives in New Mexico. A Christian friend of equal longevity and generosity in North Yarmouth. Buddhist friends in Tennessee. My chronically peeved brother in Florida. Trump voters. Harris voters. Nonvoters. People who pray, and people who don’t. People I haven’t spoken with in decades. People I’ve never met. Anonymous people, like the donors to the ALS clinic making possible the $200 gift card in Jack’s trembling hand.
It’s not about the money. “Only emotion endures,” a poet once wrote. When compassion coalesces, as it has for us this dark evening in our year, the heart swells. It is humbling, ineffable in its dimensions. It overwhelms. This kindness of friends and strangers will endure long after the money, and the wheelchair ramp we will build with it, are gone.
Our Thanksgiving-Christmas story is that we are all in this mess together, operating from a common source. And many more people than you might believe, know it.
Jack posted to Facebook a video of a song he wrote and recorded years ago with this note:
“I’m really glad I recorded so much of my material. Being unable to play anymore … I’m overwhelmed listening to myself. This song meant something to me then, but so much more now. It’s like my past self knew something that I didn’t. I know I will appreciate it more than anybody, and that’s okay. I’ve been to hell, and not coming back, but this is the type of thing that makes it a little easier to live with. The life I had gave me something back, and combined with all the love and support I’ve already received, this is the type of glue to hold it all together. For all the good, bad, and awful, light always finds its way through the cracks. But if you’re not looking you’ll miss it. It’s okay to lose battles, just don’t stop fighting the war. Love you all. Now go live. ❤️”
Dana Wilde is a former newspaper editor and college professor who lives in Waldo County.
