(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.
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.
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.
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.
