Where We Don’t Go From Here

“The Greek word for ‘return’ is nostos. Algos means ‘suffering.’ So nostalgia is the suffering caused by an unappeased yearning to return.” ― Milan Kundera, Ignorance

Curiously, despite its solemn and dramatic consequences, the Spanish Flu remains a relatively untold tale in American literature. Sure, we have scientific publications up the wazoo, along with copious journalistic accounts of the 20th century’s most infamous influenza pandemic. But most of the leading writers at the time did not address this public health catastrophe in their literary endeavors.

Our fiction libraries are not completely devoid of this historical disease. A handful of novelists tackled the issue in grave detail, such as One of Ours by Willa Cather published in 1922. But most literary references appeared years, if not decades, later, as life moved surreptitiously into the glitzy playground of the Roaring 20’s, the socio-economic misery of The Great Depression, and the tenuous ascent into the Second World War. As if indicating a need to distance oneself before setting pen to paper …. a want for a safer space, for a healing time, after the virus had released its terrifying grip on the world.

For a disease that infected over 500 million people worldwide, killing an estimated 50 million people from 1918–1919, its relative absence from the annals of American literature has been nothing short of puzzling for the last century of literary scholars. The same prolific writers who narrated the exquisite pain and suffering of the far more tangible “Great” war being fought in dirty trenches with guns and ammunition, nonetheless, seemed to ignore the contemporaneous, pathogenic war being waged on a microscopic level. It’s their stories of a world at war, and its associated death, separation, devastation, and loss that the literary minds of that unfortunate generation were able to churn out on their typewriters. Why then did most of those same unguarded writers not lay souls to bare over a worldwide infectious battle, one with significantly more dire consequences?

Given our most recent viral predicament, and my positioning as a writer, I have come to my own empirical theory on the matter.

As a student of 19th century Russian and Victorian literature in college, I was no stranger to biblically long novels of tormented romanticism and redemptive suffering. While football fanfare surrounded me in my temporal reality, I nonetheless spent most of my waking hours of the late 1990’s wandering through the prior century with Pushkin’s dueling gentlemen, Tolstoy’s happy and unhappy families, Dostoevsky’s tormented sinners, and Bronte’s seductive heroines.

Like many of my unfortunate fictional counterparts, I persistently fell ill with a cacophony of bacterial and viral afflictions. It’s a wonder my roommate did not seek permanent refuge with a healthier dorm companion. Nonetheless, she stuck it out with me from freshman through senior year, even embracing a semester-long stint overseas as my London flat mate. Strong girl. Even stronger immune system.

Somewhere in the midst of marathon study sessions and games of sock ball (our invention to keep alive the Fighting Irish spirit during laundry night), I developed a cough. A persistent cough. It waxed and waned over my four years at school, occasionally escalating to bronchitis, often keeping me hopped up on DayQuil and NyQuil (when that brand still contained “the good stuff”… you know, before the crackdown on DIY meth labs). My failing health was paradoxically kismet for my roommate — the pre-med + history major — who undoubtedly used me, and my ailments, as an early, informal case-study.

One frigid night, in between coughs, M&M’s, and Dostoevsky’s Notes from Underground, I posed a sincere question to my studious roommate, interrupting her frantic MCAT preparations.

“Jenny?” I beckoned. “Do you think I have consumption?”

The perky, redhead, freckled Midwesterner put down her pen, and swiveled around to behold her mournfully pale, enervated companion from New York, a noticeable beat of silence lingering in the air along with my contagion.

“Soooo…. First off, it’s no longer called consumption,” she explained, gingerly (a nod to her imminent poise as a pediatrician). “For quite some time now, in fact, for your entire life, that disease has been referred to as tuberculosis,” she added resolutely, no need to cross-reference the microbiology and history textbooks strewn about our tattered plaid couch.

“Secondly, you do not have TB,” she reassured in a manner that the collective hive of my future physicians would miserably fail to encapsulate. “You were inoculated from TB as a child, with booster shots along the way. So, you are fine. But… I’d very seriously consider changing your concentration to modern literature or sci fi.”

Her diagnosis was only partially correct. I did not have TB (or consumption). And yes, my psyche most likely would have benefited from a steady diet of Asimov and Vonnegut instead. But I was most certainly not fine.

My years and decades post college would reveal the truth of spiraling autoimmunity and diagnosis of disease and disorder, including post-viral and post-infectious syndromes. An intricate medical file that still grows by the day. Blood draws, invasive scopes, radiological scans, midnight ER visits, and mid-afternoon arguments with my insurance company. Boxes of intake forms, outpatient forms, and drug receipts. Physicians and nurses pushing, prodding, poking my body. First tears and panicked cries, but over time, a distanced depersonalization to it all…. A self-removal to a place where nothing feels sacred, and touch feels sterile.

There is a trauma to illness.

To facing illness. To talking about it, confronting it, admitting it, treating it, even healing from it… and most certainly, writing about it.

The details of the experience remain locked inside anemic blood cells and brittle bones. To bring forth sensation from those microscopic shadows… to speak it… to compose it… is to express what is broken, what is shattered, what is lost. It is to plummet into dysfunction, falling through an inferno, staring into a mirror of suffering. And yet, still …somehow… maintain one’s self beyond illness, and continue to exist externally.

No therapist is equipped to travel this abyss as accompanist. You have to go alone into the void. Embrace it. Walk toward your demons. Barricade yourself from fire. Slay your own dragons. Emerge from it. And tell the world what it’s like to live with a disease. With a body that doesn’t function normally. With a library of medical records that baffles even the world’s top specialists. A movement through cafe dates and happy hours with a tenuous awareness of one’s own mortality. Might this be the last coffee klatch? The last vodka shot? The choice to wallow in that, or celebrate life despite that, is intimately your own.

To be a writer of chronic illness, or really, any sort of illness, is to be a human who can visit the darkest recesses of the mind, and not run. Not grab a bottle to drown out the sorrow. Not grab a lover to feel pleasure instead of pain. Not binge watch 100 hours of Netflix to misdirect one’s conscious awareness. Even though all of that is so much easier. And in fact, it’s the human instinct for survival. But, to write about your disease is to lose yourself in your writing, without losing yourself in your illness. A tightrope walker, fifty feet in the air, over a slab of concrete and a hungry tiger, has an easier time balancing.

It’s been almost a year since I’ve written anything. I haven’t been able to face illness on a micro and a macro scale simultaneously. It’s unnatural to exist in a perpetual state of terror. I have not felt safe, wandering internally through treacherous corridors, with no external sanctuary to greet my return. No pause to alleviate heartbreak. No Rivendell respite for my very own Lord of the Rings quest. Our pandemic world erased all of those glimmers of sunlight, swiftly and without warning.

To write about the pandemic during the pandemic is to stare willingly at your frail and fractured self, while trying to grasp the shard of your singular identity in a splintered and devastated world.

It’s to address an enemy that cannot be seen without a microscope; that cannot be touched or heard with our capable senses. It’s to accept an invisible war being waged in front of our masked noses, and inside our scantily-armored bodies, witnessing corporeal defeat and our status as POWs.

Illness and death at this scale feels elusive. It’s data. It’s statistics. But I am not a data point. And despite the copious visualization maps that abound, neither are the millions of deaths worldwide at the hands of Covid-19 — a disease that’s inserted its omnipresence into our lives, along with its own lexicon. Verbiage that still rings surreal one year later despite our daily antiseptic habits.

Over the last few decades, I’ve sat in enough holistic healthcare providers’ offices to have delved into the subliminal significance of illness. The root cause of disease. The stuff that makes our early traumas. Our lingering fears. What we carry. What we haven’t yet released.

None of that means the pathogen doesn’t exist. Nor does it mean the physiological dysfunction isn’t there. Of course, it’s all real, metaphysically and physically. We can measure and quantify it in blood tests and lab reports. But our minds and bodies are connected to each other, neuro-chemically. So, what we feel, what we think, what we envision, what we suppress… it all eventually comes out physically entwined in neurons and blood cells. And if ignored for too long, it manifests as systemic disease, chronic disorder, and virulent infection.

I once had a few visits with a naturopathic physician in a quaint oceanside Connecticut town. She had a framed quote on her desk from Pema Chodron, “Nothing ever goes away until it teaches us what we need to know.”

Over a decade into sustained illness with no answers nor healing, I pointed to the frame and started crying.

“Alison, what about that quote makes you cry?” she asked compassionately.

“I still don’t know what I’m supposed to learn from all of this,” I surrendered.

Anyone who has faced chronic illness eventually comes to these questions. A higher reckoning. A dark night of the soul.

What does illness teach you?

What is infection? What is a virus? What is disease?

What is broken? How do you fix it? Do you want to fix it?

What do you lose in relinquishing what no longer serves you?

What exists on the other side of illness?

Do you believe you can heal?

Any good therapist will eventually walk you through the Kubler-Ross model of the 5 Stages of Grief: Denial, Anger, Bargaining, Depression, Acceptance. And while most people assume these stages are clinically set-in-stone, something we move through in a step-by-step manner, the original model was developed as a discussion mechanism for the key aspects of the experience of dying. And in fact, these “stages” are really more so mere “categories,” that can indeed occur in any order, some of them overlapping, some of them not occurring at all.

With anything akin to grief that comes my way, I have discovered that I hop over denial without so much as a second glance; get stuck in anger where I quietly boil; sometimes but not always attempt soft bargaining, but quickly give up for lack of energy; which is a great segue to where I linger in depression; only to find myself looping back into anger lest I give that up, until something within me shifts into transcendent acceptance. This experience of grieving may take me days, months, years, and objectively for some core issues, decades. But it’s my pattern. And it’s one that I recognize.

As a human race, we are simply not mourning. We are not grieving. We are not asking ourselves the hard questions. And we are certainly not accepting what is. We want the pandemic to vanish, without learning what we are meant to know about ourselves, our lives, each other, and the world. And this is so dangerous. Not just for us individually, but for our collective consciousness, and for the health of the earth itself.

We have to mourn our restaurants, our stadiums, our concerts, vacations and holidays. Our schools, retail shops, office buildings, and transport systems. They were important to us. They mattered. Those structures, institutions, and carefree connections meant something; at times, they meant everything. As did the people who once occupied them.

And yet, what remains from their metaphorical ashes and suspended animation is an arrogant insistence that we as humans can reclaim what is already gone. That “when this is all over,” we can “get back to normal,” without pausing for a second to consider: is returning to “what was” without mourning “what is absent” a hopeless conceit? Does a stoic return to the past, simply because we want it, denigrate all that was lost to it, and leave us vulnerable to future dysfunction?

Imagine if I were to stand at my father’s gravestone forevermore, waiting and willing him to come back, long gone 30 years ago. How would I ever claim a life for myself? What if I were to sit vigil at my doorstep, awaiting an ex-paramour to return after a breakup. How would I ever love another? Or if I were to lock myself inside my childhood house, sold to another family 16 years ago. How would I ever occupy a new dwelling space?

We must grieve and let go to move on. Even if moving on, moves us back into some of those same rooms and stomping grounds. The walls may be the same, but the energy inside is forever shifted. And in turn, as are we. The molecules in any space dance and morph, forever transformed by those who enter and exit. Without acknowledging this change, we risk wasting away, trapped in disease even once the virus leaves us … a lifetime spent with specters, pale and encumbered by what death has already taken from us, but that which we refuse to accept.

Collectively ignored grief is too much a burden for an entire world to shoulder. And it’s certainly too much for any individual or writer to tolerate. I’d like to ask Kundera what to do with this unbearable weight of being. How can I transform my experience to lightness…away from this crushing destruction and sublime atrophy? What words can be commensurate with this level of suffering? What empathy can be put on a page?

If I knew that, maybe I could write it.