September 19, 2022

The Right to Grief Without Diagnosis: Prolonged Grief in These Times is Normal

Stacy Torres author photoBy Stacy Torres

I dreaded the recent one-year anniversary of my father’s death from lung cancer, sensing an expiration date on others’ patience with my grief. The recent inclusion of “prolonged grief disorder” in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) — which defines “prolonged” as lasting at least a year for adults—heightened my apprehension.

Is my intense sadness a mental illness or just being human? Rather than pathologize ten percent of grievers that may fall into “prolonged grief,” what if we instead embraced slower grieving?

Despite mounting social and cultural pressure to get on with it, I’m recognizing the value of “slow” mourning. A year in, I’m just getting comfortable, breaking in my grief like a favorite pair of shoes. Slow grief helps me wade through intermittent shock that my father’s gone from the physical world and cope with the chronic heartache of the ongoing pandemic, a devastating war in Ukraine, and mass shootings in our schools, supermarkets, and workplaces.

One symptom checklist for prolonged grief disorder includes leaving the deceased person’s belongings unchanged. In Dad’s room, a wall calendar hangs frozen on May 2021. A small table holds “his” medications. I’ve not yet started sorting his belongings but have discarded some things, like the chair he died in, stained with the fluids of his last days. I take a picture of every item before tossing, down to his last Ivory soap wrapper. My bereavement counselor assuaged early self-consciousness about my snail’s pace grieving. I don’t intend to preserve these dying days in amber, but I’ve feared life’s daily treadmill is hastening the forgetting.

Most days I cry random tears familiar to the grieving. Recent triggers include a building demolition one block from my New York City apartment. As cranes clawed the earth, tearing the edges of grief scabs scarcely formed, sadness blindsided me as workers excavated the pit where a nondescript, two-story limestone affair stood since the 1930s.

To the average passerby, it’s an unremarkable sight in a city where buildings come down all the time. But the void left in this once taken-for-granted streetscape serves as a persistent, physical reminder of my dead parents. Earlier in its life, the John Q. Aymar building housed a Lamston’s five-and-ten store where my mother bought me coloring books and paper dolls. In his retirement years, my father picked up medications at the CVS pharmacy and frequented the Boston Market.

My sister and I sat with Dad’s body at home for hours after he died, presaging the slow grieving to follow. Shrouded in a white t-shirt and hospital blankets, he looked like a Grecian statue. I admired the timeless beauty in his deceased state, reminding me of the peaceful, “beautiful death” invoked in James Joyce’s Dubliners, feeling grateful for his—and our—relatively gentle entry into “the after.”

The more I turn over my loss, the more I doubt that I want to return to “normal functioning,” whatever that is.

The last harrowing year plunged me into desperate lows, but I’ve allowed myself to feel the full force of grief. I know from losing my mother as a teenager that I can’t outrace it. This time I’m pacing myself, training for a lifelong marathon versus a sprint. Adjusting to a loved one’s absence requires tremendous cognitive energy. Twenty-five years after Mom died, I’m often dumbfounded by death’s permanence; I still sometimes wake up crying in disbelief. Now I’m learning new ways of functioning, refashioning routines to accommodate the tears that bookend my days, much like flossing my teeth.

Criteria for prolonged grief disorder include “identity disruption (e.g., feeling as though part of oneself has died),” making me wonder how it’s possible not to feel such seismic shifts after losing those we’ve deeply loved. I was my father’s primary caregiver for 17 years. Despite the stress and fatigue, I miss taking care of him. As Dad’s disconnected cellphone number fades from memory, stinging like a paper cut to the heart whenever I recall fewer of the digits I once dialed every day, I appreciate the complex pain of these role changes and transitions.

Grief’s gifts take time to reveal themselves. Every day is like stepping back a centimeter from an impressionist painting. Some things fade, other pains deepen in exquisite detail as the scale of my loss becomes clearer. Dad’s death cracked open something deep inside of me, sparking a midlife reassessing. As I absorb the aftershocks of this earthquake, I’m learning that our fast-food, high-speed, instant-everything culture won’t validate my grief. Only I can give myself the right to pause, to rest, to retreat, without shame. As I regain strength, I’m also working to resist toxic productivity pressures. I’ve felt like a secret slacker at work, but maybe I’m just human.

Diagnostic guidelines for prolonged grief disorder specify, “the duration of the person’s bereavement exceeds expected social, cultural or religious norms.” But outdated norms poorly reflect the accumulated grief many of us carry. Against a backdrop of endless domestic and global carnage, isn’t the most appropriate response prolonged mourning? For the past two years, in classes I’ve taught, my students and I have carved out space to share grief about the pandemic, George Floyd’s murder, and most recently back-to-back mass shootings in Buffalo and Uvalde. We cannot proceed with business as usual. Prolonged grief in these times is normal.

I want all grievers to obtain the care they need. I’ve received a year of free bereavement counseling through my father’s Medicare hospice benefits, a support which should be extended to everyone in mourning. But I also retain the right to grief without shame, stigma, or a diagnosis. I’m proud to be a sensitive, feeling person struggling to comprehend life without someone I love. For the time being, I’ll occupy my slow lane. I often feel as if I dwell behind an invisible glass pane separating me from others. But I’m never really alone.

Rather than trying to resist or move past, I’m befriending my grief—welcoming it into my living room, sitting still with it. We walk together. Around every city corner, a different memory awaits. Here, Dad picks me up from elementary school, holding my hand. There, I’m an adult accompanying him to his last oncology appointment, holding his hand. Grief isn’t a stranger, my enemy, or a barrier to productivity. It’s part of me. And we’re going to spend a lot of time together.

Comments

Reading this today on my father's 17th death anniversary, befriending grief is the best one can do when one suffers the loss of a loved one. My father, a very healthy man of 73, died very unexpectedly and it took us years to go beyond the rawness of that loss and even now my brother and I talk at great length about it.
Be well,
Manisha

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