Reflections on Alzheimer's - The Paradox

I spent most of the first 30 years of my life looking forward to things. I looked forward to weekends, vacations, graduation, paychecks, as well as finally losing those few extra pounds. I assumed I would be happy once these events occurred, and didn’t notice how fleeting the happiness was, that even while each longed-for event occurred I was looking forward to the next. I never lived in the moment.

I was aware that I was extremely blessed. I never experienced a deep loss, say, of a parent or sibling or friend. But in my 30th year, while looking forward to the end of a long-awaited pregnancy and a career I was tired of, tragedy struck. My parents called on Memorial Day weekend of 1999 to deliver the crushing news: at 55, Mom’s recent air-headedness had been diagnosed as Alzheimer’s. In the next few days, I grieved profoundly, for the dark future, and for the happy times that would never be. When I came out of shock, however, something strange happened. I had wondered whether I would ever smile again, and whether we would cry all through the month we had planned to spend together, and yet that summer was the best of my life. There is a day, two months after diagnosis, written in my journal. My whole family was at the cottage and we had a beautiful, fun-filled day ending with homemade ice cream and a bonfire. “What a great day!” I wrote. This made no sense to me. How could I be happier after the tragedy than before? And people were assuming I was impatient and excited for my baby to come. I’d answer, “No, I’m comfortable and he’s no trouble in there.” What had happened to me? Why wasn’t I ticking off the days?

When people are struck by a tragedy which is quickly over, such as the loss of a family member in an accident, the pain is devastating and life-altering. They will treasure life more because it is so uncertain. They learn that the only thing they can be sure of is the precious present. But when they come up for air in a week or a month or a year, the slow process of healing can begin. Of course they will never really be over it, but the arrow leads mostly upwards. Not so for Alzheimer’s. After the initial shock, the arrow leads down for a long, long time. I expect every day to be a little worse than the last, for 10 years or more. I’m not saying I’d want to trade Alzheimer’s for another tragedy, just that a slow, inevitable decline adds an extra life-altering dimension. I started hoping my baby would take a long time, that Christmas wouldn’t come, that time wouldn’t pass. And I started grasping hold of every second, even a mundane one, to wring out every last drop of joy it contained. My goal was to experience each moment so fully that time would actually stand still. Then my Mom could live forever.

This outlook has made my experiences richer and therefore improved my life. The paradox is that my Mom’s devastating terminal illness, the sorrow of my soul, has improved my life in a way that no other experience could. Like everyone else, I saw Dead Poets Society and was touched when Robin Williams whispered “carpe diem,” seize the day. I thought about it sometimes, but it didn’t change my life. There are some lessons that can probably only be learned in that venerable institution, the School of Hard Knocks. I don’t expect this essay to change anyone’s life, either. But I hope it can convey that we often don’t know what’s best for ourselves, and that acceptance of tragedy can open other doors.

I’d like to end with these lines from a poem I wrote about sand tumbling through an hourglass. Though I could never have written it before Alzheimer’s entered my world, this simple refrain now echoes through my days.

This grain of sand is in my hand.
My fingers close upon it and impress it in my mind.