It may go without saying, but facing a terminal illness is often desperately sad – a steady march toward inevitable demise. It’s easy to feel sorry for yourself, to focus on everything you’re losing. If you’re not careful, it will consume you. Finding a way to revel in moments of joy, strangeness, or humor, no matter how small, was a matter of survival.
And there were moments when stupidity gave way to something almost sacred, a sort of filial language without words. It allowed me to reach across the chasm of his illness and grasp something tangible and familiar.
Dementia is a degenerative disease, which essentially means that it works by eroding the brain. This is an oversimplification, but in general atrophy begins with inhibition and control mechanisms. Then it moves deeper, into the hippocampus and the frontal lobe, where it begins to eat away at memory: dates, faces, experiences, language. Some things inexplicably last longer than others. But eventually, the disease reaches the brainstem. It is at this stage that the body forgets how to perform the most basic functions: how to chew, how to swallow, how to breathe. This erosion process happens terribly slowly, and yet, somehow, much too quickly.
My father died in March 2015. I was 18 years old.
A few months earlier, my sisters and I took him home for the day. We spent the afternoon at the beach, where he took a nap in the sand. Later that night, after dinner and after the health center curfew, I volunteered to drive him home. He sometimes got nervous in the car, so I put on his favorite album which, like all dads everywhere, was “Graceland” by Paul Simon. How many times had I heard that opening accordion riff wafting through his studio window?
It was late August and the air was warm. I thought he might fall asleep in the front seat, but when “Diamonds on the Soles of Her Shoes” came on, he started humming, and then slowly began to sing. I hadn’t heard him say more than a word or two in several months, but his voice was clear and sure. He knew most of the words, and he yelled happily through the ones he didn’t know.
