For years my mother has been in decline with vascular dementia. My adult daughter, who lives with me, has uncontrolled seizures. And recently I became primary caretaker for my first husband, diagnosed earlier this year with brain cancer that, despite surgeries in February and July, yesterday was declared inoperable.
The medical situations of these three people, all so very close, have me pondering the concept of identity and who we are — even, who I am.
Cells between our ears, behind our faces, somehow govern our behaviors, our ability to think, our personalities. Do they define us, or do we have identities that transcend our bodies?
My mother, once assertive and self-assured, has become dependent on those around her for the simplest decisions. “Is this where I sit?” she’ll ask as she approaches the chair at her kitchen table where she’s sat at meals since my earliest memories. “Is this my bedroom?” she’ll ask, heading down the hall to one of three. Sometimes it is her room; other times, she chooses incorrectly.
And yet this very same woman is still telling me how to drive, announcing speed limits and red lights and complaining if we have to wait at a light.
My daughter, innately happy and easy going, will — in the tangle of a series of seizures — become anxious and inconsolable. “Please, please,” she pleads with me, grabbing at me, even though she knows there is nothing I can do. In my better moments I talk her through the emotions that flood over her as the seizure approaches. Anna has compared it to an approaching wave that she knows will knock her flat. The comparison is apt, because fighting the seizure causes more distress than diving into it and calmly riding it through. But still it’s frightening to watch her body contort against her will. I take for granted that I can move my arm from this side to that at my own bidding when she finds her arms, her legs, her entire body in motion and she has no power over them.
And now we are told tumors have found their way into Tim’s corpus callosum, the region deep inside his brain that allows communication within the brain itself. And indeed there are times now when he needs step-by-step directions in the simplest of tasks. “I want to go back to bed,” he told me tonight, and yet he was helpless in determining how to get there.
“Put this hand here on your walker,” I directed him. The hand I spoke of was gripping the wall at the door of his bedroom to steady himself. I motioned to the walker in front of him, and he seemed surprised it was there, even though it had brought him there moments ago. But then he followed my direction and it unlocked his brain to find the rest of his way back to his bed six feet away. This is the man who ten months ago drove to work, paid his bills, and cooked his own meals just like the rest of us.
Whether electrical storms or invading tumors or clogged veins killing healthy cells — all change the landscape, permanently or temporarily, inside the brains of these people I love. And yet I continue to know them, who they are, their “true” selves.
It occurs to me that who Tim is, who Anna is, who my mother is all continue to be informed by my memories of them in other times. It’s as if my own gray matter also counts in defining who they are. It isn’t any different when my sons stand in front of me and I see the little boys shooting Matchbox cars on tracks down our stairs into the living room.
We human beings are neurologically programmed to perceive time in one direction, moving from now until later, and yet our memories hint at a broader definition of What Is.
As I watch the father of our sons, the man who proposed to me on a roller coaster, stumble forward to a certainty no one covets, I realize that my memories help to anchor him in place in this world. They steady him and keep him whole, despite the reality of what is happening inside his brain. And even though I sometimes look into my mother’s face and, like the line in the Dr. Seuss book, think to myself, “Are you my mother?” I understand she still is there, because the woman who gave me life and bought me Nancy Drew books exists in my memory.
The senior President Bush declared the 1990s the decade of the brain, and in 2013 President Obama announced the birth of the Brain Initiative. As people, we know we have huge gaps in understanding this organ inside our heads. It is a medical frontier as vast as the universe, and our knowledge of its workings is embryonic, not even having reached infancy.
Perhaps someday a woman in my shoes, with neurology all around her, will have wiser words to offer, more profound concepts to contemplate. For now, I will cling to the fact that we live on and through the memories of people who love and know us, that time exists in more than one direction, that life is full and has purpose and meaning. I believe in More, even though I’m not neurologically programmed to understand all that that is.