I just read, and re-read, then read again an article in the August 20, 2014 edition of the New Yorker called “A Place Beyond Words: The Literature of Alzheimer’s,” by Stefan Merrill Bloc. (Click the title if you want to read it, too.) The piece is very well written, yet somehow infuriating to me. I’m not sure why, so please let me work this out with all of you who have been following my story since 2010.
Bloc’s article nods to all the “great” work — nonfiction and fiction — on the topic of Alzheimer’s. The author looks to these works for answers about what it might be like to have the disease …when I consider my own future in a family predisposed to Alzheimer’s, I’m left with urgent questions that only fiction can answer: What do those late stages feel like? What is it like to lose oneself and still live? Could there be some essential kernel of selfhood that survives until the end? Mid- to late-stage sufferers, lost in their aphasia, can’t explain it to us.
I’m disappointed that my memoir, Brain in a Jar, was not on his reading list or even his radar. I’ve written about the very same thoughts he is thinking for many outlets — the New York Times, Chicken Soup for the Soul, MariaShriver.com — as well as in my book. Am I petty? Jealous? A jerk? Probably all three. Take note, though, that unbridled rage is an early sign of AD.
Bercaws, like the Bloc family, have been treading deep in this memory-stealing quicksand for a while. My before-his-time neurologist father intuited things about AD back in the 1970s that people are only beginning to discuss now — for example, its relationship with Down syndrome.
If I don’t deserve to be heard, then my father most certainly does. I tried to give him a voice as he was losing his ability to speak, and even more so after he lost his life. Did I not express his story well enough? Forcibly enough? Surely, we should be part of the literary canon of this disease.
Dr. Bercaw took care of hundreds, if not thousands, of AD patients during the course of his 40-year heart-felt career. He worked until his own brain gave way to plaque and tangled tau — just as his father’s had in the 1960s. From the time of grandpa’s death, my dad preserved his dad’s brain in a jar. A reminder of what he so fiercely fought in others, and so desperately feared for himself.
If Stefan Merrill Bloc needs a crystal ball, then he need look no further than Bercaw brains.
Even though I’m not a famous fiction writer, or a fabulous movie star who penned a memoir, perhaps I can help answer some of his questions. Here, for everyone’s consideration, is the reality of a daughter hoping, probably failing, to keep her mind out of the family jar:
I moved to Abu Dhabi in late August, coincidentally about the time Stefan Merrill Bloc’s story was published. One of many reasons I came here was to avoid reality. Am I hiding from confusion by being a confusing place? I’m not sure, but it is comforting to feel lost where it makes sense to be lost. Back in Vermont, where I couldn’t always tally a tip on a restaurant tab, I was terrified. There are methods behind my madness — an inherited trait from an inherited disease. And in retrospect, I see how my father also manipulated our perceptions of what was happening. He played hide and seek, or Marco Polo, with dementia. We caught onto the game long before it was over.
In the future, if people ask when Nancy Stearns Bercaw knew she was heading in the disintegrating direction of her father and grandfather, please tell them — as well as Stefan Merrill Bloc — this was the moment:
I was on a public bus in Singapore. I was surrounded by people speaking Hindu, Urdu, Mandarin and Arabic. I didn’t long to understand their languages. Instead, I realized that you don’t have to know what’s going on to be content. I liked looking out the window. Not thinking. Not knowing. Not going in a particular direction. Just along for the ride.
It’s the bus driver — or the caregiver — who bears the burden of memory. Alzheimer’s is the only disease in which the burden shifts to those who know the grandeur of what is being lost.
Those who are lost, meanwhile, no longer care.
The fact that I’m kicking and screaming so hard against “A Place Beyond Words: The Literature of Alzheimer’s” means I may still have a way to go.
In the time that I have left, I ask to be remembered along with my father. Even if you never heard of us, we mattered.