Author’s note: The following is the first chapter I wrote for my upcoming memoir. It reflects the tale of one of my earliest memories. Future excerpts will be available only to paid subscribers; if you enjoy this and would like to read more, please consider becoming a paid subscriber to receive installments right in your mailbox! ~KSM
I first encountered the specter that would follow me my entire life on a mild June day in 1978. At that point, my mother and grandmother still measured my age in months instead of years, and although many toddlers learn to walk before this point, I hadn’t quite developed the physical agility to do so myself; according to my mother, I would achieve that milestone the following month.
As the years progressed, I would come to know this specter as a nebulous force that would steal the memories, movements, facial expressions, and ultimately, lives, of the women I loved most. I would sense, always, that it would seek to claim me, once it was done cannibalizing my maternal line. But upon this first encounter, I would only know it as a force that frightened my grandmother, and that she shrouded this fear in a cloak of anger.
The human brain works in mysterious ways, and the memories of individuals appear in countless shapes and forms. Much of my childhood is a blur, but meeting this specter would serve as one of my earliest, most formative memories. The precise details are lost to time, but the emotions are as clear as if we were all still in that room together. I witnessed a combination of fear, rage, and sadness congeal into a toxic sludge that was impossible to wash off any of us; this sludge would etch into and scar us and we would carry those wounds the rest of our lives.
I spent much of my life unsure of exactly when this encounter occurred. In my mind, I thought I was about 2 or 3 years old; when I asked my mom about it, she placed it at around the same time. But after the specter arrived to claim my mom’s neurons, I was the wary recipient of our family’s photos. Some were albums curated with care by my dad’s ancestors, with stern faces, sepia tones, and Victorian garb. A few select tintype photos from his long-deceased kin appeared in various boxes. Others came in the form of countless slides I had to run through a scanner to view on my computer screen. But the snapshots from my early childhood were stored in a series of toile-patterned keepsake boxes. Contained within these boxes were the images that would bring my fuzzy childhood memories into sharper focus—my father and I looking at each other with expressions of pure love, the beige IBM Selectric typewriter that my mom used constantly and on which I would someday learn to type, the fire engine I got for my second Christmas. And, amongst the holiday photos, there was one slightly yellowed image, with “THIS PAPER MANUFACTURED BY KODAK” printed diagonally across the back in fading grey letters. In blue ballpoint ink, my grandmother’s neat cursive identifies:
“June 1978 Lori, Kelly, Mama, and me.”
On the right side of the photo, an ivory-colored drapery hangs on the wall. There is no window nearby. The drapery is situated behind a twin-sized bed. I recognize it, as I have seen such draperies in the nursing home where my mom now resides, as a privacy curtain. This is not visible in the photo, but this curtain would be on a track in the ceiling, to afford privacy to roommates when one was in need of a sponge bath or some other delicate treatment.
On the bed are the four generations of my maternal line, in perhaps the only photograph taken while the four of us were in corporeal form. My grandmother is on the right, directly in front of the drapery, with her hair dyed black and permed, and a big smile on her face. On the left side, my mom sits, balancing me on her knee. My mom wears round glasses with thick lenses. She smiles, but her disheveled hair hints at the familial struggle beyond the snapshot. I’m wearing red, white, and blue overalls, with a strap threatening to slip off my shoulder. Frankly, I look like I’m in need of a nap. In between my mom and grandmother is my great-grandmother, or what remains of her at this point that the specter has not yet claimed. Her white hair is permed in tight curls; she, like her daughter, wears a housecoat and has a death grip on her purse, bringing to mind my mom’s frequent comparison of her mother to Sophia Petrillo, the diminutive but spunky matriarch portrayed by Estelle Getty in the 1980s sitcom The Golden Girls.
Two of us look at the camera in this snapshot: my mother and my grandmother. I look off in the middle distance, my eyes glassy and forlorn. My great-grandmother, meanwhile, wears a blank expression, her steely blue eyes fixated on nothing. It is impossible to discern what, if anything, she was thinking in that moment. But what is clear is that she is not present.
In an age of instant access to information, it is easy to forget that our knowledge of a wide breadth of medical conditions was severely limited until recently. Understanding of mental illness was even further limited in 1978. So even when a mental condition was acknowledged, treatments were far less sophisticated than they are now. Indeed, such mental conditions were stigmatized far more often than they were treated with compassion. For sufferers of mental illness, the choices were either to mask, deny, and suffer in silence; or act out and be medicated to the point of catatonia.
It was in this unenlightened environment that my grandmother and her mother found themselves.
When the four of us reunited on that impactful afternoon in June, my great-grandmother could not remember my grandmother’s name. In fact, she did not recognize my grandmother at all. The specter that others would call Alzheimer’s had stolen this knowledge from my grandmother’s brain, for no other reason than because it could.
The pain of this forgetting would prove too great for my grandmother to bear. She would find comfort in her anger. “She wouldn’t forget Alice!” my grandmother declared in a hiss. The acidity of her anger hung in the air and stung our eyes. Decades of jealousy toward her sister spewed forth, and my grandmother swore she would never visit her mother again, if she would only be forgotten.
The emotions in the room frightened me. I’d seen my grandmother angry before, had witnessed her outbursts, but there was an undercurrent I’d never sensed in her before. I recognize it now as betrayal and profound grief, but those were sophisticated feelings for a 17-month-old to grasp. This made me fussy, and my mom set me down on a nearby chair to chase after my grandmother, who was stomping toward the exit.
All the fear saturating the room filled me up. I was terrified they would leave without me, so I climbed down from the chair, and took a toddling step or two toward my mother, before I toppled over and landed on my rear end. I screamed, and tears rolled down my cheeks. My mom heard my cries and turned around, quickly returning to scoop me up. But she remained distracted and determined to follow her mother, so her arm supporting me as I straddled her hip was the only comfort for my cries. The three of us went to my mom’s car, and my grandmother finally stopped fuming as she heard my shuddering gasps for breath as my sobs subsided—the tremulousness of my breath would be familiar to anyone who has witnessed the aftermath of a toddler meltdown.
The interior of my mom’s red Beetle filled with the pregnant silence of fear and anger; this silence, combined with the rough purr of the Beetle’s engine, would lull me into a slumber; the denouement of this encounter, if there was one, would be forever obscured from my knowledge.
Nevertheless, this scene would make its way into my hippocampus classified as a core memory. Subsequent trauma therapy would help me recall other moments from my childhood with more clarity and even unlock some I’d filed away deep in my subconscious, but even before therapy, I would always recall this as one of my first memories. The realization that my beloved elders would someday forget me due to what felt like a familial curse would combine with the trauma surrounding my development in the womb and birth, the early loss of my father to glioblastoma, and my mother’s physical and emotional absence during my earliest years into a deep fear of abandonment. This fear would inform and impede my clumsy, desperate attempts at friendships throughout my childhood and well into adulthood.
But these early traumas would also offer a silver lining of sorts: even as a child, I had a more practical understanding of death than most. A lifetime spent witnessing my great-grandmother’s succumbing to Alzheimer’s disease, then watching it claim my grandmother over the course of the last decade of her life, would prepare me to navigate my own mother’s battle with the specter with a grace not afforded to our predecessors.
Now that she is in the late stages of her dementia, my heretofore uncanny ability to reorient my mom fails more often. Years spent cultivating a deep trust are no match for a rapidly disintegrating brain, especially when that brain receives scrambled messages from eyes diseased and blinded by macular degeneration and cataracts. Even when I do succeed in restoring her to a comparative lucidity, the connection is tenuous; she remains easily distracted, whether by external stimuli or by random thoughts that flash through her mind.
Despite our strong, deep bond, Mom does forget who I am from time to time, more often now. When she has these lapses and then recalls who I am, her eyes fill with tears; her voice grows thick and shaky. She apologizes in an urgent attempt to soothe me. She has forgotten much, but the trauma of that afternoon in June 1978, it is clear to me, remains somewhere in there. She fears I will be as angry with her as her mother was that day over four decades ago. Calmly, I assuage her guilt, her grief, her shame. I tell her I know, no matter what, that she loves me, and always will. That even when she doesn’t know who I am, she knows I am her person, the one she can turn to when she’s lost. That knowing I love her and she loves me is more meaningful than recalling my name or exact relationship to her.
Mom may be through the looking glass on her journey with Alzheimer’s. But I remain determined to escort her through as much of it as possible, to break the cycle of toxic emotions I first saw the specter evoke in our grandmothers. It may be impossible to save her life or her decaying mind, but pulling her out of the cycle of self-loathing over her forgetting remains within my power.
The specter my mother, grandmother, and great-grandmother all fought—the specter that may still come for me yet—is stronger than us. But it is not more stubborn than either her or me. I remind Mom of this often; being recognized for her stubbornness often rouses a chuckle out of her.
For now, Mom is still in there, somewhere, even if her consciousness seems to spend more time poking around in the Bardo than it does embodied in our terrestrial realm. Stubbornly, we will not let the specter take away the one thing it claimed from our ancestors that we can preserve: our bond.