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Courtesy of Julie Zeilinger

Watching my grandfather die showed me all the problems with how we treat illness in America

I was between jobs when I got the call. It was 10 am on a Tuesday, and I had already been parked on my couch for a couple of hours, sick of sleep but somehow still exhausted.

I was in the midst of a depressive episode. I irksomely, inconsistently vacillated between feeling numb and fantasizing about getting a reprieve from my life — about taking hallucinogenic drugs, maybe even slipping into a coma, but not actual death.

I was interrupted by one such contemplation of entering the space between life and death when I got the call that my grandfather had just arrived there. He had fallen in his assisted living facility and took an unexpected, inexplicable turn for the worse on the way to the hospital. Somewhere on the Hutchinson River Parkway, his potential concussion somehow morphed into mortal illness.

My mother’s words — confused, distressed, urgent — sliced through the blurry haze of consciousness that had become my norm. I peeled myself up from the couch and a few hours later found myself in a Westchester hospital.

Twenty-four hours after that, my brother was on a plane from London, racing against my grandfather’s remaining time on Earth, which doctors whispered was limited.

Three months later, my grandfather was still lying in a hospital bed, supposedly battling pneumonia. He had returned to the hospital after several miraculous (but still incomplete) recoveries and trips to rehab, followed by dire, seemingly instant declines. Day in and day out, his organs continued to not quite fail.

His other symptoms refused to coalesce into a diagnosis or call for a specific treatment. His veins flowed with the morphine a rotating cast of doctors pumped into him — a treatment that alleviated the pain caused by his mysterious symptoms. He was not dead, but he was not alive either.

America’s problem with death

My grandfather is not alone. His experience is an increasingly normal one, and one that is in many ways emblematic of the way modern Western society has come to contend with death.

We view death as a surrender. We see it as an affront to the medical advances that aim to center longevity over quality of life. And so we hold maintaining a heartbeat, the flow of one’s breath, as preferable to death, no matter the pain and suffering doing so might necessitate.

For most of human history, death was a swift event. In 1945, most deaths occurred quickly at home. Just four decades later, in the 1980s, only 17 percent of Americans died at home, according to Atul Gawande’s 2014 book Being Mortal.

Today, death has increasingly become a battle, a contentious process more so than an inevitable and singular event. Our new normative mortality is a "long, drawn-out death after 85," Sandra Tsing Loh observed in the Atlantic, adding that the demographic experiencing this is also the fastest-growing in the nation and is projected to more than double by 2035.

As a result, the final years of life have become increasingly medicalized. The modern medical industry views death through a misguided lens of human progress and encourages doctors to battle death at any cost — despite the fact that this cost is unsustainable and unreimbursable. Ninety-seven percent of medical students take no course in geriatrics, and only 300 medical students trained in geriatrics in 2015, according to Gawande.

"We do not (and will not) have the resources to properly care for our increasing elderly population, yet we insist on medical intervention to keep them alive," Gawande summarizes. "To allow them to die would signal the failure of our supposedly infallible modern medical system."

And the consensus for my grandfather’s treatment was just that: We would not fail him. We hadn’t discussed his wishes for his death while he was alive, so we pivoted to the seemingly default option. We would not let him die.

My grandfather’s optimism is precisely what made it so difficult to talk to him about death

I am used to observing what remains unspoken. I am frequently, usually, the silent one in the room. My silence is almost invariably intentional. But seeing my grandfather lying in the center of a circle of doctors forcefully inserting a ventilator into his body, for perhaps the first time in my life my silence was compelled.

A violent, nauseated compulsion to leave the room subsumed me — a compulsion I fought, the thought, Your grandfather’s death is not about your comfort, you asshole, anchoring me to the doorway.

It was not the hovering specter of his actual death that compelled me to leave, though, nor was it any kind of concern for myself. It was the sight of my grandfather’s body robbed of his autonomy that disturbed me most — the inserted tubes, the attendance of strangers, the imprisonment in bed.

My grandfather was born in 1924 to a Danish father who epitomized toxic masculinity and an Italian mother who embodied her own stereotypical gender role (I’m told I got the "feeding" gene from her bloodline). In 1943, he was drafted into the Army Air Corps, where he witnessed death more intimately than any 18-year-old near-child should.

His foundation is the same as that of so many men who rise to the top of our American-as-apple-pie patriarchal hierarchy, and yet he subtly subverted this expectation every chance he got, in every way that mattered.

In 1960 he married a woman who embodies the most sexist understanding of the adjective "strong-willed" (a quality that would be labeled "strength" or "independence" in men) and spent every day of their marriage encouraging her to do so unapologetically.

In 1991, he and my grandmother retired to Cleveland, Ohio, from New York City so that he wouldn’t miss a day of his grandson’s life, and in 1993 he jiggled his newborn granddaughter in a Snugli strapped to his chest.

In 2002 he drove her to and from school and practices in the aftermath of her mother’s cancer diagnosis, dedicated to maintaining the relative normalcy of her world, and in 2011 he read the first draft of her feminist screed of a book called A Little F’d Up: Why Feminism Is Not a Dirty Word. He told her he loved every word, that he was proud to be her grandfather.

In March 2016, he cracked jokes with the EMS driver who rushed him to the hospital, apologizing for the mess he made in the ambulance.

He was, in a word, remarkable. He was, in many words, entirely undeserving of the pain he ended up experiencing for months on end. His family knew this in their bones every single day they watched it unfold, without a clue as to how to do anything else.

We didn’t have a clue because this man’s remarkable optimism made conversations about his own mortality impossible, the scenario they would suggest improbable.

Most Americans don’t have this conversation. Only about a quarter of American adults have completed an advance directive, which delineates what medical treatment they want in case of a crisis in which they can’t vocalize those wishes.

Yet the majority have a clear preference: More than 80 percent of patients also say they wish to avoid hospitalization and intensive care during the terminal phase of illness, according to the Dartmouth Atlas of Health Care.

As my grandfather rapidly declined, my aunt and mother buried their uncertainty in a series of pointed decisions, conversations with doctors, and every act of caregiving accessible to them. They tried to balance their culturally and personally motivated compulsion to opt for all lifesaving efforts with the pragmatic knowledge that those ultimately may not be the kindest options for their father. They visited my grandfather every day, despite the fact that it made no logistical, financial, or emotional sense to do so.

I saw him three times, not because I callously, selfishly refused to see him as much as I could before he was gone but because, to me, he already was. My grandfather embodied and enacted a subtle, but artful, deliberate, meaningful, type of autonomy in his relationships, in his being — a type of autonomy I realized was gone the second I saw him in that hospital bed.

He did not die that first day. But then again, he did.

How do you grieve someone who is still alive? How do you grieve someone who has lost his autonomy but not his life?

"At least he’s still here," and other unhelpful things people said to me

The last time I saw him was on Father’s Day. I’m told this was the last day he smiled — specifically when I walked into the room. I immediately zeroed in on his gaunt cheeks and the specter his face formed without his dentures. His always meticulously shaven face was a patchwork of stark white whiskers, his jaunty belly deflated from an intravenous diet.

He centered only on the fact that I was there. He looked into my eyes. No — he looked toward my eyes, the ability to focus long gone. Those eyes were what sent a shot of searing fire up my spine and straight down my gut.

"I feel like a confused, exhausted tourist in my body too," I wanted to tell him. I thought about my depression, about the pit of emptiness that had become my mental capacity outside of working and otherwise functioning on a basic level. I thought of the inability to look toward the future with any kind of understanding or excitement or optimism.

But I would never say that. A deep wave of shame encased me every time I even thought about comparing my grandfather’s suffering to my own. I watched my aunt and mother suffer stoically as they simultaneously lost their father and gained an all-consuming, helpless charge in need of care. I watched my grandmother sit silently crying, incapable of understanding the depths of pain of losing one’s partner of more than five decades. I watched my grandfather die.

I was not them. I was not him. While my inability to author my life was festering in my mind, my grandfather’s final chapter was forcibly written for him, resolutely restricting his body and mind. We were not experiencing the same thing at all.

And yet. The narcissistic inkling of relatability had hooked in my mind. Not only had we both lost various forms of autonomy, but the ugly truth at the core of our suffering was also ignored. Our qualitatively disparate but similarly visceral, uncomfortable, devastating pain is our culture’s Medusa: We refuse to look it in the eyes, afraid doing so will immediately refract, pollute, infect us.

"At least he’s still here," well-meaning well-wishers — who have tacitly accepted the modern idea that sustained life trumps all — assured my family.

"He’s a fighter," doctors assured us.

Their vocabulary was deficient. They were incapable of expressing empathy for the experience of watching the prolonged pain of another’s intermediary state of being unfold. So they opted to ignore this complexity altogether and pivot instead to absolutes, to optimism.

My depression inspired the same reactions. As the pain of my depression infested my mind, infected my life, I was encouraged to smile through it, to take actionable steps in order to improve — the complexity of my experience of depression too depressing for others to simply sit with.

"You just need to quit your horrible job," one family member advised. "You’ll feel better once you do."

"That year after college is tough," an older friend advised. "Just wait; it gets easier."

What does it say about a society that fails to allow nuance, to approach with an open mind something a vast number of people experience and the only thing every single one of its members will face with complete certainty? What does it say about a society that tries to deny these things altogether?

Why our culture should become more comfortable with frailty

My grandpa died on June 23, 2016. We’re told he just closed his eyes and let go.

After his death, I did not walk into a beautiful sunset, imbued with a new lease on and understanding of life. I did not have an anthropomorphic experience with my grandfather’s spirit embodied in a small woodland creature that assuaged my pain.

Instead, I existed within the quiet and, yes, slightly relieved space created by my family, exhausted from months of witnessing, negotiating, and preparing for a loved one’s death. A space quiet, that is, until I began to question it.

What if instead of insisting we live in a culture of individualism and perfectionism, of unyielding patriarchal strength, we accepted frailty? What would happen if we leaned on each other and acknowledged that we’re all falling apart, all the time, in all ways? What if we looked this pain in the eye?

My grandfather will never know. But I’m trying to find out.

I asked for and was lucky enough to receive professional help while my grandfather was dying, but I didn’t tell anybody outside of my immediate family that I had until after he died.

I’ve decided to speak to combat the stigma against the relatively common experience of depression. I did so to grant friends who may be enduring a similar struggle to feel less alone.

But my agenda for doing so was ultimately less about culture change or broader solutions: I began to talk about it to simply ask people to see and sit with my pain.

Whether it’s mental or physical, lethal or not, we seem to think that the only way to contend with another person’s pain is either to deny it altogether or to optimistically, forcefully determine to defeat it. Perhaps we think doing so will immunize us from it.

The pain of my grandfather’s prolonged death was inevitable from the day it began. His family did not know how to contend with it, and while we vacillated between depressed defeat and manic reassurance, rarely did we simply acknowledge it, full stop.

The pain of my depression was inevitable from the first day it confined me to my bed. The people in my life did not know how to contend with it, other than to deny its persistence or attempt to look past it. Rarely did anyone acknowledge it, full stop — including, for a long time, me.

"I’m so sorry you’re in pain, but I see it. This is happening."

Our medicalized society aims to cure. But at some point, curing became synonymous with eradicating, and the hard truth is that much of the time, that eradication is impossible.

All of the expensive, often invasive medical treatment my grandfather received was not even hypothetically meant to eradicate the possibility of his death; it merely elongated his intermediary experience of life before it happened.

While I have benefited greatly from therapy and medication, I am also aware that depression has been and may always be an aspect of my life with which I’ll have to contend. Perhaps, therefore, there’s a far more challenging, more evasive compromise: validation.

The last words I said to my grandfather were, "I’ll see you soon. You’ll feel better soon." Maybe they should have been, "I’m so sorry you’re in pain, but I see it. This is happening."

Perhaps that would have confused him, would have done nothing to help him whatsoever. But perhaps he would have felt seen, felt validated. Perhaps that honesty, rather than the last lie I ever told him, would have been the best thing I could’ve said to him after all.

Julie Zeilinger is the founder and editor of the WMC FBomb, a website for young feminists in partnership with the Women’s Media Center. She is the deputy editor of MTV Founders; her writing has been published on MTV, Mic, the Huffington Post, Forbes, and CNN, among other publications; and she is the author of two books: College 101: A Girl’s Guide to Freshman Year and A Little F’d Up: Why Feminism Is Not a Dirty Word.

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