A Lesson from the Goddess Jeannette

(Note: I wrote this post two weeks ago, before the sudden death of our beloved Pomeranian Nala, the galvanizing murder of George Floyd and resulting rash of protests and violence, a death in the family and too many things to even recount. I was so knocked off my axis that I was unable to post in a timely fashion, thought to update this entry to reflect recent events but decided to keep this as I wrote it, complete unto itself.)

Monday dawned bright and crisp, spring arriving in a pandemic-scarred Manhattan, nature asserting her glorious self despite the human crisis. I awoke bleary-eyed, having been roused several times in the night in tandem with my husband, recuperating from a serious ankle injury some three weeks earlier.

My time in quarantine has been bracketed by the Before and After eras of his accident, just as all of our lives are bracketed by the BC – Before Coronavirus and the now.

In the Before the Accident era of the quarantine I found myself possessed of energy, good humor, a sense of optimism and focus. I was busy with several projects that engaged my interest and felt productive and creative. I divided my time at home with careful visits to my elderly parents, wearing a medical grade mask and protective gear, bringing food and good cheer. Even the week following his fall -- which included a terrifying breathless journey to a safe Urgent Care and then a COVID-free ER (in NYC!!!), the hospital admission, tests, swift medical consultation and emergency surgery – found me proactive, organized, calm, competent.

Perhaps I should not have been surprised that following the initial week home, I crashed. Big time.

I stopped wanting to speak with friends. I slept in the clothes I had worn during the day. I began obsessing over the ubiquity of science- and reality-denying Trump supporters on my Facebook feed. I found myself increasingly unable to tune out the daily antics of Trump himself. The death toll kept climbing. Mother’s Day was approaching and I hadn’t seen two of my three adult children in months, was sharing my grandson’s first year through FaceTime.

A steady theme running through my days was the safety of my parents, living independently but with shifts of caregivers. The thrum of anxiety was my constant background noise.

Going outside was wrought with peril, beginning with navigating the common spaces of our apartment building. A refrigerated morgue was parked down our block, next to the hospital. Sirens pierced the air day and night. I avoided the elevator, taking the stairs...which is where my husband had fallen. I held my breath while bringing the garbage down to the basement, despite my mask. I veered away from unmasked people on the sidewalk, some smoking, other running uncomfortably close by. When we had a visiting nurse and physical therapist come to the apartment, I ran to open the door for them, then retreated inside the apartment, shouting directions for them to my husband in our bedroom. A post-operative visit to the orthopedic surgeon on the Upper East Side was nightmarish as we encountered a crowded waiting room, receptionist without a proper mask and no hygienic protocols observed.

Like most everyone else, we lost friends and loved ones, attended Zoom funerals and shivas. There were days that Facebook seemed like one long obituary section.

At home, I was on-call in a rather intensive way, given the extent of my husband’s injury. The trauma he suffered was not limited to the fall itself; he was also processing the freaky corona-time hospital experience. The nurse’s bell I bought him clanged constantly and I contemplated throwing it out the window.

I alternated between feeling sorry for him and for myself.

Though I was sharp and strategic on Zoom calls, the second I hung up, I could not recall what I had promised, what I was supposed to do, what the project was even about…and subsequently did nothing.

Actually, that is not true. 

I was occupied nearly full-time in a completely new endeavor: active, full-time despair.

Despair wallpapered my daily life. It provided my every meal. It served as my sidekick.

I was totally adrift in an ocean of hopelessness.

And then I saw a text from Jeannette, also known as The Goddess Jeannette, my friend and partner in a remarkable project.

Her text told me that she missed me, wondered how I was. She knew about my husband’s accident and was checking in with me. She had a few things she wanted to share with me as well.

Guiltily (because I had dropped my correspondence with her) then gratefully, I texted back to let her know I could speak during my daily walk on the nearly empty Columbia University campus, which was the only place I felt safe to walk.

I swam through the familiar murky waters of hopelessness but somehow managed to wash my face, tie up my sneakers, grab my mask, phone and hand-sanitizer and head out the door.

Hitting the campus, I made the call and when I heard her voice…rich, melodic, multi-dimensional, warm, wise…everything changed.

Early into the pandemic, my friend Rabbi Ellen Bernstein pointed out the blessing of our technology in keeping us connected. Newly isolated during the most social/communal season of the Jewish calendar -- Passover -- we connected through Zoom, FaceTime and our cellphones.

While it has become fashionable lately to bemoan the ubiquity of our screens, the pandemic reversed that concept.

How blessed we are to be able to be together in our quarantine, defying the laws of physics!

And now, owing to this technology, I was together with Jeannette, she in her home on Long Island, me tentatively treading this unpopulated section of the Columbia campus, glancing around nervously before removing my mask.

I asked my friend how she was.

“Darling, you know that I’ve been in quarantine my whole life. This is no different, really.”

I knew Jeannette’s story well, after all, I am editing her memoir. Afflicted with Multiple Sclerosis since her early 30’s, Jeannette grew up on the premises of institutions for the criminally insane, the child of Holocaust survivors. Since I was first introduced to her story, I marveled at her optimistic spirit, keen sense of humor and sheer strength of will…made all the more remarkable by the adversity she has faced her entire life, the sheer amount of which seems nearly statistically impossible.

Jeannette Perutz Elsner was born to Shoah survivors from Poland who arrived on this shore alive in body but decimated in spirit. Seeking cover, they opted for a life of hiding in plain sight, living among the “feeble-minded and criminally insane” residents of three separate “snake-pit” state institutions.

Even before her MS was diagnosed, Jeannette survived a number of improbably freakish medical conditions. Her best friend was killed in an accident when she was a young teen. She survived sexual assault at the same time and managed to extricate herself from a coercive, abusive relationship with her married mentor as a young student in clinical psychology.

Now, despite her inability to walk, despite her diminishing vision, despite the excruciating pain that is her constant companion, despite the multiple failures of her neurological system, Jeannette wakes up each day, spends hours completing tasks that take minutes for those of us who are neuro-typical, exercises to Motown music and faces each day…not without despair, but in the face of despair.

Her decision to live each day is a big Fuck You to MS, a big Fuck You to her fate.

She accepts her fate and rejects it at the same time.

That is why I call her the Goddess Jeannette.

Over the course of the past three years, I have dived into Jeannette’s life as a reporter, a voyeur, an investigator, a detective, a spy, an admiring friend. We have spent countless hours talking…on the phone, in upscale restaurants, at her dining room table. We attended a glittering, celebrity-studded MS event together in Los Angeles one year ago.

Just a year ago...but a lifetime ago. Before Coronavirus.

Nearly two years ago, with her adult son David, we revisited the heart of her childhood horror -- Letchworth Village – the now-abandoned NY State institution where her father served as an on-site doctor, consigning her to a childhood where abnormality was her normal. David had just learned the truth his mother had kept hidden from him and his brother. As we climbed through the haunted, abandoned buildings, the true shape of her childhood – the true dimensions of his mother’s character – became known to him.

Now here she is, facing another bit of improbable adversity, this time in good company.

“To tell you the truth, aside from the fear of infecting myself because I cannot wash my hands easily, my daily life has not changed under COVID-19,” she said to me in the first weeks of the pandemic.

Before the Accident, I told Jeannette that I wanted to write about the secret that she holds; the life hacks she can teach us to transcend this terrible moment.

Before the Accident, when I was possessed of the determination to overcome the adversity, I committed myself to serving as a megaphone, publicizing the secrets of survival known to many survivors of trauma.

And then I allowed myself to fall into the snake-pit of despair.

But that Monday, Jeannette threw me a lifeline.

“You are dealing with a holistic sense of threat,” she told me, after listening to me recount my experiences of the past two weeks. “You have lost your illusion of safety. Here’s the difference between us: I never had this illusion. I’ve lived under extreme threat my entire life.”

Jeannette named the amorphous monster that had overtaken my existence.

My new despair was a reaction the new and unwelcome sense of daily menace.  Most of us have no antibodies to threat. Born into the most secure and prosperous era of history for Americans, we have no reflexive ability to respond to the new normal.

Let’s be real. Before COVID-19 came to our shores, our lives have been a Hollywood rom-com, a day at Disneyland. Unless we have personally encountered death or devastating disease, unless we have experienced hunger or crushing poverty, unless we are survivors of violence or assault or war, we know nothing about surviving this present moment.

What we need to do is find the survivors among us – of the Holocaust, of adversity, of battle, of disease, of political unrest, of hunger, of neglect, of violence – and hear their stories. We need survivors to kick us in the butt, teach us how to shout a loud Fuck You to the adversity of the present moment.

The antidote to despair is the knowledge that the human spirit is resilient.

The antidote to despair is perspective, the knowledge that crisis has happened to humanity before. The extended period of comfort, ease and safety we experienced is actually an anomaly in the history of humankind. Disruption and crisis are the forces that have changed the course of human history.

We are now in a historic turning point whose trajectory – and meaning -- will only be revealed over time.

That Monday, my dear friend and collaborator Jeannette, survivor of an improbable number of traumas lifted me out of my despair by naming my new adversity – a pervasive sense of being under threat -- and reminding me that survival is embedded in our DNA.

My conversation with The Goddess Jeannette restored me to my warrior woman self.  Warriors know the importance of shouting when they confront an enemy and so, I have woken up each day since Monday shouting: “Fuck You COVID-19!” I am also shouting a big Fuck You to the corrupt clown-king occupying our White House and his administration and cronies.

It feels good to shout back in the face of threat. It feels good to be reminded of our capacity for fighting the good fight.

I never knew until the present moment that the archetypical struggle of Good vs. Evil was actually real. I thought Hollywood dreamed it up, didn't know it was ripped from real life. What we are understanding now is that our lives, Before Coronavirus were charmed. 

After my conversation with Jeannette that day, I returned to my apartment and promptly located the short essay she had written at the beginning of the pandemic, in response to a query from David Brooks of the New York Times. As it was not printed, I am presenting it here.

Read it once, then read it again.

Read it often.

You will need it.

I Have Been Here Before

By Jeannette Perutz Elsner

I have lived in some form of isolation my entire life. I am the child of Holocaust Survivors and when my father came to the States, he found work as a residential physician in various mental hospitals, including Matteawan State Hospital for the Criminally Insane, Letchworth Village and other "snake-pit"-like institutions of suffering and terror. It was on the premises of these houses of horror that my childhood unfolded. My formative years were characterized by a sense of quarantine, being locked away from normal life, imprisoned within a hellish alternate reality, subject to outrageous and traumatic events.

More than three decades ago, as a young mother in my early 30's, I awoke to find myself fully paralyzed. Thus began my personal plague: Multiple Sclerosis. While the paralysis eventually lifted, the tell-tale symptoms replaced them. Over the intervening years, as my illness progressed, I have felt alone and isolated, overwhelmed by the awareness that normalcy or even health is all illusion. Reality can change in a heartbeat. Everything is fluid; changeable, unreliable. We all live at the mercy of the moment.

Now, with the advent of this horrific global pandemic, we are united, seized by an invisible virus that has violently and abruptly broken our core illusion of emotional, physical , financial stability and safety.

For most of humanity, this experience is novel but for me, it is familiar.

I've been here. When you have MS, you live in lockdown, you are quarantined within yourself, isolated from humanity and the flow of daily life. 

As such, I believe I have some wisdom to impart right now. Here are some useful tips for survival amid brokenness:

Accustomed to being alone, I try to find emotional purpose in my physical and emotional isolation. Many mornings I am broken. My tears frighten me for wiping my tears with my imperfectly cleansed hands can prove deadly. I try to find connection with people and family, even at the risk of being met with the avoidance and impatience that many people have for candid conversation surrounding sickness. or hardship. With the entire world united in this perverse manner -- we are all victims of COVID-19, infected or not -- I find that the bonds of humanity sustain all of us. And paradoxically, ironically, I find myself oddly calm and confident, knowing that I already disabused myself of the illusion that any of us have control over our lives or fates. Strangely, I realize that those of us who live with suffering have an edge right now, a resilience. Used to being imprisoned within our bodies, we are strangely empowered with superhuman strength and purpose during this uncertain and terrifying time.

Talk to us. We will help you through.