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.

I coped by deliberately separating 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.

Seeing Things and Hearing Things

When I was about eight years old I had a very high fever that caused hallucinations through the night. I remember lying in my bed in the room shared with my younger sister, staring up at the ceiling as a parade of miniature creatures crossed my field of vision. It was difficult to tell if the beings were human, but they were translucent and colorless and very animated, and they seemed to be hosting a party for my benefit. They were so real I couldn’t help being drawn into the conversation. Continue reading “Seeing Things and Hearing Things”

By Her Hand

We saved precious little of my mother’s writing. To the best of my knowledge, neither notes nor letters nor even a grocery list remains. We have my father’s correspondence to her in the last stages of World War II, when he left New Jersey for Army Basic Training and then shipped to the Philippines for several years. My mother preserved these letters in a tidy bundle stored in the lower right-hand drawer of her dresser, but her replies are lost. Other documents were thrown away several years after her death, at around the time we gave away her clothing in an effort to help my father move on. My sister Ellen kept one birthday card signed with my mother’s uniquely spelled “Mommie,” but that ‘s all we have. Continue reading “By Her Hand”

Reasoning by Analogy

A classic puzzle that cognitive psychologists use to test thinking skills is the Tumor Problem, which poses the following hypothetical dilemma. A patient has a malignant tumor in his abdomen. If the doctors direct a strong dose of radiation through the surrounding healthy tissue, it will destroy both the tumor and the healthy tissue. On the other hand, the dosage that can pass through healthy tissue without harming it is too weak to destroy the tumor, and the patient will die. What can the doctors do to destroy the tumor without damaging surrounding tissue? Continue reading “Reasoning by Analogy”

Thursday’s Children

My first photo album contains a pockmarked old picture of my mother baking Christmas sugar cookies. The dimpling is the result of the photo being ironed into the album at too high a temperature, but it’s still easy to make out the subject. My mother stands in the red-tiled kitchen of her first home with my father in Cliffside Park, New Jersey. She is wearing a red top and grasps a cookie sheet with a red potholder. I recognize her signature shade of vermilion lipstick, which she used to paint onto her lips with a tiny brush. Against the backdrop of these shades of red, her pale face glows ethereally. She smiles broadly as she leans forward to place a freshly baked cookie from the sheet onto a platter of others. Closer inspection of her shirt reveals that it’s maternity wear, which provides a further explanation of the glow and also dates the photo to December 1956. At age 31 she is pregnant with her first child, my brother Bill, due three months later. She had had two prior miscarriages in the previous two years, so making it through her second trimester around Christmastime would have had special significance. Continue reading “Thursday’s Children”

Three Little Words

The fall of 1975 was a time of beginnings and endings. It was the first day of my last year in middle school. It was a time of trendier clothes and turning the corner on childhood. In preparation my mother took me to a local hair salon for an official grown-up haircut, another of the rare occasions when just the two of us were together. I got a fashionable Farah Fawcett-style cut with wings on either side of my face that didn’t look great. The wings were sprung too tightly on account of my thick curly hair, but I didn’t care. I felt like a movie star. At the salon my mother showed me how to deliver a cash tip into the stylist’s hand after paying up at the counter; my first glimpse of the mysterious social transactions of adulthood. Continue reading “Three Little Words”

Not Knowing

It’s July 1975 and we’re back in Brooklyn at my distant cousin’s Rite of Ordination. A group of unknown relatives from my father’s side of the family greeted us warmly at the church when we arrived from the New Jersey suburbs. After the ceremony, we attended a party at someone’s modest home, probably the family of the newly ordained priest. Because they were outside our immediate family circle, these relatives met my teenage attempts for attention with kindness and respect, instead of the usual wrist flick of dismissal I was used to. Each person I approached at the party listened with an amused smile as I tried and failed to work backwards through the family tree, from my father to our common relation. I marveled at being treated like a grown-up even as my ancestry bit tanked again and again. Continue reading “Not Knowing”

Relief

My parents rarely made a big show of birthdays. Maybe it was their Depression-era frugality or the fact that there were five of us kids. Birthday celebrations at our house usually consisted of a cake baked from a mix and a few modest presents after dinner. Spring 1974 was different, though: My mother threw me a surprise 12th birthday party. Her prior record of thrift combined with my middle-girl low expectations made me the perfect dupe for her scheme. The day after my birthday she arranged for my brother Bill to take me to the Paramus Park shopping mall, which had opened only two months earlier. To my friends and me, it was the greatest cultural institution to hit Bergen County since the Route 17 Drive-In. In addition to all those stores in one covered space, it had indoor trees and the first food court of its kind in the country. Continue reading “Relief”

I’m Not Lisa

Mid July 1975 my family was driving to Brooklyn, NY, to celebrate the Rite of Ordination of a distant cousin we had never met. Having turned 13 a few months earlier I was enjoying the rights and privileges of my own upgrade to teenager, which included my mother sitting next to me in the back seat of the family station wagon. For the long car ride she had volunteered to hem the green and white–checked peplum top I’d started sewing in a summer school class but hadn’t quite finished. I held out the pinned-up hem for her as she sewed with both hands, taking out pins one by one from the fabric and putting them between pursed lips as she went along. The twangy country-pop song “I’m not Lisa,” sung by Jessi Colter, came on the radio.

I’m not Lisa, my name is Julie.

Lisa left you years ago.

Continue reading “I’m Not Lisa”

The Black Box

During my mother’s week-long hospital stay in late summer 1973, my father distracted us kids by easing the household embargo on what we called “good cereal”: the brightly packaged, sugary stuff that all my friends seemed to eat, but was strictly forbidden in our health-conscious home. That itself should have been a clue of something extraordinary taking place, but I don’t remember being sad or worried about my mother’s hospital stay. Her absence from home felt like an adventure, an exciting break from routine, like the time we had slept over our cousins’ house for a few days between the sale of our old house and the closing on our new one. My sister Ellen remembers that during the week my mother was away, all of us kids kept house and made meals. She remembers baking a lemon meringue pie that came out perfectly, a feat she has never repeated. Continue reading “The Black Box”