My grandmother on my mother’s side had dementia and spent the last years of her life in a home. I was told that she liked to bite people. I never saw her during that time–she was in Belgium, I was here in New York–but hers is the only experience I have with Alzheimer’s. I got to thinking about her as I read Charlie Pierce’s beautiful memoir about the disease, his family curse, which claimed his father and four uncles, and which may eventually claim him, as well.
Here is an excerpt:
The waking dream is of a dead city.
There was a great fire and the city died in it. I am sure of that. I can see the smoldering skyline, smoke rising from faceless buildings, flattening into dark and lowering clouds. I can hear the sharp keening of the scavenger birds. I can smell fire on damp wood, far away. I can feel the gritty wind in my eyes. I can taste the sour rain.
The waking dream comes upon me when I forget where the car is parked, or when I buy milk but forget the bread, or when I call my son by my daughter’s name. Wide awake but dreaming still, I walk through the ruined city.
When it happens, I remember. I remember everything. I remember anything. For years, I have been a walking trove of random knowledge, but I’ve come not to believe in the concept of trivia. I do not believe that anything you remember can be truly useless because I have seen memory go cold and dead.
“Why do you know stuff like that? people ask.
I smile and shrug. I do not tell them about the relief I find in remembering that Leon Czolgosz shot President McKinley. Not to remember Leon Czolgosz is to realize that one day you may not remember your son. Leon Czolgosz goes first, and then your children. Not to remember is to realize that the day will come when you cannot find your way back home, that the day will come when you cannot find the way back to yourself. Not to remember is to begin to die, piecemeal, one fact at a time. It is to drift, aimlessly, deep into the ruined city, and never return.
…There’s a game I play now, when the waking dream comes. I make a deal with the disease. All right, I say. I will allow you to have some of my memories. You can have my first polio shot, all the lyrics to “American Woman,” two votes for Bill Clinton, and both Reagan administrations.
Leave me my children’s names.
Let me know them, and you can have all four Marx Brothers.
This is not clinical. I know the disease does not work this way. But sometimes, when the waking dream comes and I can feel the wind all gritty on my skin, I play this game anyway, and I am very good at it. I was born to play it. I was raised to believe that truth is malleable, and that you can bend it so that even its darkest part can be shaped into the familiar and the commonplace. I can play this game. I can play it well.
Makes you appreciate the moment, this moment, for what we have.
You can order Hard to Forget: An Alzheimer’s Story, here.