In this op-ed, Lindsay Lee Wallace explores grief, and how no amount of success in school or work could protect her from it.
When my mom took her last breath, I was on hold with customer service. At work in another state, I didn’t know the corporate-core jazz melody on loop was soundtracking her death—but it was apt. By that point, I’d spent nearly a decade being serenaded by the dulcet tones of capitalism while elsewhere, my mother suffered
October 25, 2023 was the four-year anniversary of her death from multiple sclerosis, a disease experts agree is not supposed to kill you. Her secondary cause of death was listed as “adult failure to thrive,” polite hospice parlance for “starving to death.”
Grief anniversaries are always weird. Sometimes they tear you apart, sometimes they numb you out, and sometimes they do both at once while also assailing you with a dozen other tailor-made horrors too exquisitely hideous to name. One of the weirdest things about these cursed days is how little the universality of death lessens the unique weight of losing the person you lost, the way you lost them.
As this particular anniversary loomed toward me, I felt an edge of anticipation rising through my grief. For all my infographic-informed understanding of grief as non-linear, and all my therapized knowledge of my chronic post-trauma as stressful and disordered, my internal clock had marked four years of mourning. Now I was expecting to graduate.
Vivisecting life into four-year parcels comes naturally to anyone familiar with the U.S. school system. There’s a weight of expectation that comes at the end of 1,460 days, and if the four-year cycles I’d excelled at in the past were any indication, graduation looks a lot like memorialization. I felt that I was supposed to celebrate my perseverance, post photos with my mom on social media, say tearful goodbyes, and receive some sort of assurance that I’d found something worthwhile to learn from it all — just like I’d done at the end of four years in high school or college. But the day came and went, and I’m still wandering the same halls, realizing that the capitalist systems of academia and career I was taught to prioritize throughout my life, which made four years feel like such an important milestone, were the same ones that told my mom to just hurry up and die already. All I’ve learned, after four years at Dead Mom University, is how much I wish we’d had the resources and the understanding to do it all differently.
When I was 13 and my mom Debbie was 54, we both entered congregant living. After my parents’ divorce, I’d lived mostly with my mom, crawling into her bed to escape my frequent nightmares all the way through middle school. After my sophomore year of high school, the most time we ever spent together at a stretch was seven or eight hours. We were never truly alone with one another again.
I went away to boarding school on financial aid with the sweetest understanding any awkward, bookish, future-former-gifted-child can have: that I was being rewarded for being smart. I was made to understand that this experience would give me access to new echelons of opportunity that hadn’t been available to the generations of my family before me. I did not yet understand what else this experience was meant to give me: enough distance from my mom’s progressing disability that I wouldn’t be able to hear it over the sounds of chapel bells and coxswain yells and the first 14 lines of “The Canterbury Tales.”
Meanwhile, my mom went away to a “senior living community.” After unsuccessfully petitioning for disability accommodations in her workplace, she found herself forced into early retirement instead. She lived for a brief stint in a regular apartment again, only to experience neglect that landed her the ICU. A hospital ethics board refused to discharge her unless it was into a skilled care facility, permanently. There, she was surrounded by the constant deaths of people decades older than her, experiencing ahead of her time the hell of America’s crumbling elder care infrastructure and how it dovetails with our history and present of meeting disability with dehumanization and institutionalization.
There are tiers of quality to the places you might live if you’re no longer able to contribute under capitalism, and your community is unable or unwilling to hold you. The final resting place my mom’s income bracket afforded her always smelled, and there was always someone calling for help. There were kind caretakers who painted her nails deep red and smiled at me, and some cruel and thoughtless ones. All of them were likely paid a miserable, unlivable pittance to be responsible for more residents than one person could ever responsibly care for. My mom knew of no way to see mobility aids except as markers of shame and loss, and had no way to leave through a front door with an electronic lock and a code kept from residents. The building was beside a river, but her window faced the internal courtyard.
Miles away from the river and the courtyard and the crying, I graduated from high school. Everyone smokes a cigar on Prize Day, which is what my school called graduation. After we’d all shaken the Headmaster’s hand and not thrown our caps into the air (because the girls wore crowns made from real flowers and the boys wore nothing but full heads of thick, tawny, healthy hair) I watched through a cloying, impenetrable haze of smoke as people I’d felt bullied by in A.P. Gov were tearfully embraced by the people who cherished them most in the world, and then they all went home together.
I know my mom was there—the two photos of us together prove it—but I can’t remember her there. I imagine she squinted at the June sun ricocheting off the white dresses all the girls wore in lieu of robes, announcing our holy matrimony to higher education and all associated blessings, but I’m not sure. She came to the graduation, but not the lunch afterwards. I can’t remember what she said to me that day.
I layered in more distraction at liberal arts college and then I graduated again. That day, we poured a jug of my mom’s urine into the hydrangeas because the bathrooms were too far away. They bobbed in the light wind of a gorgeous May afternoon, and took it without flinching. My mom was high as a kite and the college failed to save her a seat but she drove her chair to the front row and parked herself there anyway, escorted by a dear friend and caretaker. Her odyssey was broadcast to my entire class via a live feed of the graduation tent meant to occupy us as we waited to make our entrance. Later, I watched her drink a cosmo through a straw at our celebratory lunch and felt like my heart would explode.
I can’t remember what my mom said to me at this graduation either, but I know she brought me flowers. I put them in water that same day in a vase in an apartment in the loudest, most distracting place I could think of: an apartment in New York City.
The care home staff later told me that attending my college graduation—this moment that was supposedly the culmination of all this work and sacrifice, of all my mom had given up to lift me up—was what killed her.
One week after my graduation was the first time they called and told me my mom was going to die. She didn’t, and the next day I went to a job interview and found myself a desk and a job where I believed I had achieved the perfect alchemy of pain in the ass and pleasure to have in class that grants girls and women in movies the chance to be both successful and loved—something that would keep me safe. I didn’t think about the faulty insulation of the two-year associate’s degree my mom had earned, or the employer she had begged to protect her, or the nuclear family she’d built and lost after leaving home at 17.
I would rush away from my job several times more for false alarms before the day my boss would eventually politely ask me to stay at work and listen to hold music while my mom did finally, actually die. Then the government paid out the life insurance my mom had paid into for 30 years —time and funds that seemingly meant nothing when she asked for either accommodations to keep working, or a livable pension. I obediently handed a chunk back to pay off my student loans. Then five months later the pandemic hit, and all my distractions turned to ash before a catastrophe that threw the unjustness of the health care system into searing, public relief.
Mass fear and righteous fury and the sting of governmental abandonment and betrayals both minutes and centuries old swirled and bubbled over on a national scale. Nobody slept. People and communities came together and apart. People made promises.
But that kind of concern wasn’t built to last in a society so focused on churning through lives to spit out capital and gristle. Not for those mourning and not for those still vulnerable to COVID, of whom my mom would have been one, had she lived to see this. I can hardly imagine a worse place than a nursing home from which to watch what has unfolded over the past four years. I can hardly imagine her surviving to watch longer than the first four months. It has been four years since she died, but she was already a ghost. She could not afford and was not afforded that rare kind of home for someone so lastingly sick that deigns to keep more than just their body alive.
October 25th, 2019 was the first time that the grief I’d grown gnarled under for most of my life felt legible. Four years later, I have realized how much our society’s insistence that disability is incompatible with family stole from my mom and me. Neither the applause as I received diplomas and job offers, nor the chatter in richly furnished rooms of wealthy people, nor the sounds of the city outside my window will ever be louder than my mom calling, sobbing that it hurt everywhere and no one would help. Nothing will ever drown out the abyss of isolation that had howled between us as we were swallowed by our separate institutions, our family severed far sooner and more violently than necessary.
In “All Our Families: Disability Lineage and the Future of Kinship,” Jennifer Natalya Fink writes about how “Disability is erased, repressed, covered over [...] destroy[ing] the connections between generations of disabled people, their families, their caretakers.” She writes about this experience as it pertains to her and her daughter, and to members of her family she found only through research, who were born with Down syndrome. My experience of it is not as the caretaker, urged by society and fear to erase my child, but as the child, watching my caretaker systematically erased.
I’ve lived in three different apartments since my mom died. I’ve had as many jobs. I’ve gotten a cat she would’ve loved and tattoos she would not have. I started putting my writing in places where other people could see it, which I think would have made her happier than anything else I’ve done, the kind of happy where she would’ve cried and said something devastating like, “oh Lucy-Lou.”
And I’ve learned that grief is not a graduation. When you graduate, there’s a cohort, someone to turn to and say, “I can’t believe we did it.” When you grieve alone for someone who was institutionalized long enough that the world has mourned and forgotten them already, there is nobody to turn to and say, “I can’t believe what we’ve done.”
I still think I see her places, sometimes.When I remember I’m wrong, it’s not because she’s dead, but because I know she would never have been able to go out alone. I only wish it were ironic that a pandemic that brought on its heels an ocean of assurances and explanations about the nature of grief would be dismissed as prematurely as that grief always is, and with the same facile calls for resilience. It has been four years since my mom died and all of the things that killed her are still right here, howling. I wish I had learned sooner to listen. I wish I had understood that we deserved better. That we all still do.
