Alive But Not Living

For a recent Cognitive Psychology course at Smith College I assigned a reading by Psychologist Daniel Levitin describing a case study from his own life— a former colleague who began to lose memories of the past due to a brain tumor on his temporal lobe.1  Levitin’s article explored the relationship between memory and our sense of self: Does eradication of the one also eradicate the other? The students wrote brief reflections on this question.  One compared the patient in the article to the famous anterograde amnesiac Clive Wearing, who lost the ability to form new long-term memories after contracting encephalitis. The resulting damage to his temporal cortex forced him into a blinkered existence of discrete moments fading before he could react to them. Wearing was so debilitated, wrote student Yulia Lavysh, that he seemed “alive but not living.”2 As I read through her paper, the phrase leapt off the page. It was an accurate description of Clive Wearing’s life all right, but on a deeper level it captured my mother’s state of being during the last months of her illness.

Remember my mother this way (circa 1967).

March 1976 was a time of extremes. In the space of a few days the weather in Northern New Jersey swung from a low of 19 degrees to highs over 70, while my family grappled with the final phases of my mother’s cancer. A letter my sister Ellen wrote to a friend around that time provides rare details of my mother’s medical treatments.  The results of a scan (most likely another bone scan) revealed that the secondary cancer had spread to every bone in our mother’s body. Ellen must have shared this with me because I remember murmuring that ominous phrase —“every bone in her body”— to a few close friends. The doctors had also detected cancer in my mother’s liver, and had just scanned her brain as well.  It wasn’t looking good.

I have researched several cancer websites to determine whether the final months of my mother’s illness followed a typical timeline.  The sites categorized two sets of cancer symptoms: One for the final weeks of life, and another, involving more severe symptoms, for the final days. According to cancer.net, symptoms associated with the final weeks include: “worsening weakness and exhaustion, minimal appetite, weight loss and muscle thinning, decreased ability to talk and concentrate, and loss of interest in the outside world.” What is striking about my mother’s illness is that she showed these symptoms not for weeks, but for months before she died. The more severe symptoms—for the final days of life—include: “dryness of mouth and lips, disorientation, a tendency to drift in and out of consciousness, and gradually becoming less and less responsive to touch or voice.”  My mother showed all of these symptoms and more, but rather than days, the symptoms lasted for weeks.

The hallucinations that had plagued her weeks earlier finally stopped, to the relief of the entire household, but the resulting silence heralded something far worse. By late March my mother was no longer cognizant. Her body continued its steady decline, wasting to perhaps seventy pounds; Ellen thinks she might have been down to as low as fifty pounds. For weeks she lay stiff and immobile in the bed. And yet my mother hung on, like Edward Poynter’s painting of the pale Eurydice clinging to her beloved Orpheus as he drags her out of the underworld. My mother’s life was her family; we were her collective beloved. Her desire to remain with her husband and children impelled her through the advanced cancer stages. At least that’s how I had always imagined it, until someone suggested recently that our own feelings —a tannic brew of love, fear, and dread—might have kept her tethered to life.

Either way, in adulthood I understand and appreciate my mother’s tenacity, but during her illness, her lingering state terrified me. Back then I could only witness the grim transformation, the unremitting toll paid to a faceless enemy who ravaged her body and altered her appearance beyond recognition. I remember a graded bump protruding from her lower back, but Ellen says no; that’s not medically accurate.  Perhaps the bump is a memory confabulation caused by horrified notions of bone cancer. My mother’s hair began to thin, eventually falling out in handfuls. Her signature jet-black side curls transformed to wiry grey tufts. With each passing day, she resembled less and less of the person I had grown up with, most notably in the eyes. In the last weeks they stared vacantly into a perpetual midrange, focused on nothing and nobody.

According to Ellen’s letter, she and Bill privately agreed that it would be better for my mother to die than to continue suffering. The anguish that comes through the letter points to more than the illness and suffering; it is the not knowing whether my mother’s death will happen or not:

“I would say that by this time next year, [my mother] probably will have died,” wrote my 16-year-old sister. “I just wish I knew if it definitely was going to happen.”

I knew nothing of my siblings’ conjectures. My own coping strategy involved a deliberate separation of home and school life; to stay sane I revealed very little about my mother’s illness to people outside the family. Most of my friends didn’t know, the family for whom I babysat regularly didn’t know.  Even teachers were told the bare minimum. By cordoning off my mother’s illness like a crime scene or the site of a biohazard spill, I could keep it to a manageable size. When people did find out, their sharp, in-breath concern blew out the proportions of grief again. I couldn’t bear the awkward attention and overbearing sympathy they inevitably rained upon us.

One such incident involved a neighboring family with whom my mother had feuded. Lest I’ve given the impression that she was a perfect person, she wasn’t; she had personality flaws like the rest of us.  Hers veered toward self-righteous inflexibility now and again. During the previous summer, the brother of one of our neighbors had tried to crash my brother Bill’s high school graduation party. He was in the class one year below Bill and his friends, so not on the guest list.  Some hosts might have made an exception once the party was in full swing, but not my highly principled mother. She refused to allow the interloper to stay. He left with a scowl and a chip on his shoulder that had forged an ever-widening rift between the two families ever since. Months later, when word got around the neighborhood that my mother was in failing health, a few delegates from the disputing family came around, most likely to get a glimpse of her downfall and perhaps even a taste of self-satisfying smugness. I remember ushering them into her bedroom where she lay, hair disheveled, unresponsive, staring into middle distance with glassy eyes. The neighbors gasped aloud and exclaimed, “We had no idea she was this sick!” Some awkward minutes later they shuffled out of the room, silent and ashen-faced.  As I type this memory, extreme discomfort blooms like a firework in a distant sky. It trips a motherly instinct to reach across the dining room table to protect my own daughter—who sits opposite absorbed in her own work—from something that happened decades before she was born. I catch myself just in time.

The most difficult change we witnessed occurred during the last week or so my mother was home. This transformation involved more than the accrued subtraction of things she could no longer do, as described in that second, more severe list of cancer symptoms. It was a qualitative shift, prefigured by another change to her eyes: They took on a wild cast, like the glare of a terrified horse.  And then one day she passed an impossible threshold. I have searched in vain for a more delicate way to describe it, but the truth is that the essence of her personality departed, as if a candle flame had been snuffed. To my young mind it seemed as if imprisonment within a failing body had been too much for my mother’s refined soul to bear: In protest, she slipped away, like in an old-fashioned movie where the double-exposed image of a character’s body sheers off the bed while the physical body slumbers on. What remained was not a sleeping person as you might expect, but something less—a loose arrangement of bodily elements on the bed. That was all: alive but not living. Her body hung on, but only in the most basic, biological sense. 

When I assigned Dan Levitin’s article to my Cognitive Psychology class, I already knew the answer to the puzzle about memory and the self. My students and even Levitin himself reached the same conclusion: Memory loss alone does not extinguish the essence of who we are. From witnessing my mother’s illness I know that it takes something far more insidious. Cancer didn’t just rob her of her life; it also took her humanity. 

Footnotes

1 Levitin, D. (2012). Amnesia and the self that remains when memory is lost. Retrieved from https://www.theatlantic.com/health/archive/2012/12/amnesia-and-the-self-that-remains-when-memory-is-lost/266662/#:~:text=Professor%20Pribram%20felt%20that%20when,memory%20had%20not%20touched%20it.

2Yulia Lavysh gave me permission to use her description of Clive Wearing.

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