Two years ago, on a visit to South Africa, I met a most extraordinary man. Tony had lived in a hospice for several years completely immobilized by Motor Neuron Disease, except for being able to move his eyes, talk, and swallow.
Tony’s extraordinariness didn’t come from his disease, but how he coped with it. It wasn’t possible to ignore that he was in a hospice, or that his disease was degenerative, and that the room in which we talked would be the place of his death. However, that all faded into the background very quickly. We talked about old times (we discovered that we had been raised in the same neighborhood), politics (we argued quite a bit, as I recall), and of course, sport.
There were jokes, both light and decidedly dark while Tony enjoyed a cocktail or two.
He was a gentleman.
I visited Tony as often as I could, but soon it was time to return to the US. I vividly recall my last visit. Tony had a beer and toasted our friendship. I could tell that he wanted me to linger, and I did as long as I could before going on to a dinner appointment.
My last words to Tony were: “I promise you, I’ll see you again.”
I revisited South Africa this summer, but Tony was dead.
Several months ago, I learned, the final deterioration began, but Tony was ready for his death.
Quietly, over a period of about three weeks and at the end surrounded by those he cared about most, he succumbed.
Iwas several months too late to fulfill my promise.
I’ll bet Tony’s chuckling at that.
“Timing,” I think he would have joked, “is everything.” Or perhaps “Thanks for nothing Mark, a miss is as good as a mile!”
Tony didn’t volunteer for his terminal illness. However, in his witty biography, “Happy Chappie,” finished just before he died, he explains that he made the decision early on after diagnosis to live with his illness until he died rather than waiting to die because of his illness.
He’s bequeathed to us a profound lesson in what it means to be human, and how he coped, in “Living With Motor Neuron Disease.”
Go watch it. Share it.
That’s what Tony would have wanted.