It probably goes without saying, but battling a terminal illness can often feel extremely sad — you're walking steadily toward inevitable death. It's easy to feel sorry for yourself and focus on all that you're missing — and it can become overwhelming if you're not careful. Finding ways to enjoy moments of joy, quirkiness, and humor, no matter how small, was a matter of survival.
And there were moments when that silliness turned into something almost sacred, a wordless statement of filial piety that helped me reach beyond the chasm of his illness to grasp at something concrete and familiar.
Dementia is a degenerative disease, which essentially develops by eating away at the brain. This is an oversimplification, but generally speaking, the atrophy starts with the inhibitory and control mechanisms. The atrophy then progresses deeper into the hippocampus and frontal lobes, where it starts to erode memories of dates, faces, experiences, and language. Some memories inexplicably last longer. But eventually, the disease reaches the brain stem. At this stage, the body forgets even the most basic functions: how to chew, swallow, and breathe. This process of erosion is painfully slow, and yet somehow very fast.
My father passed away in March 2015. I was 18 years old.
A few months ago, my sister and I brought our son home for a day. We spent the afternoon at the beach, and he napped in the sand. Later that night, after dinner, perfectly past curfew at the care center, I offered to drive him home. He gets nervous in the car sometimes, so I put on his favorite album, which, like any father, was Paul Simon's “Graceland.” I can't tell you how many times I've heard the opening accordion riff wafting through the window of his studio.
It was late August and the air was warm. I worried he would fall asleep in the front seat, but then “Diamonds on the Soles of Her Shoes” came on and he began to hum, then slowly began to sing. I hadn't heard him say more than a word or two in months, but his voice was clear and confident. He knew most of the words and belted out the ones he didn't.
