What are you doing to keep busy during the Covid-19 crisis? Are you one of those mothers who is schooling her children while holding down a full-time job from home, feeding her family three meals plus snacks every day, and keeping the house inhabitable? Are you one of those essential workers who gets up every day and goes out into the germ infested world to make things easier for the rest of us, preparing and trucking the food and supplies we depend upon, packing and delivering the orders we place in the comfort of our own homes, manning the food banks, evaluating and treating the sick and dying in our hospitals and nursing homes? Worrying that you will pickup the virus and carry it home to your children?
Or, like me, perhaps you're retired and living alone. Really alone. Cleaning your place again and again even though it hasn't collected a single cobweb since the last time you cleaned. Reading through the stack of books that has been collecting dust in the back of the closet, undisturbed, for years. Or, maybe you're toying with the idea of starting the book you've always wanted to write...or pulling an ancient manuscript out of the drawer and getting back to work on it...
...which is what happened to me this week. I was paging through the pages of a book I started to write years ago when I came across a piece I'd written about someone I knew who had died of the "flu". Not Covid-19, but "just the flu." It came directly out of the journal I kept to document the ordeal. I shortened it a bit, and changed the names and dates so I could share it here. It just seems to fit.
"Write what should
not be forgotten."
~Isabel Allende~
Lora’s
Story
Monday, June 22
My sister, Patti, called from Long Island
tonight. She doesn’t call me often, but when she does, I listen up. There's usually a medical question on her mind. In this case, she told me her best friend, Lora, had come down with flu-like symptoms—fever, chills, and a cough—that
had gotten worse over a period of several days until she couldn’t catch her
breath. This forced a trip to the emergency room where her oxygen levels were
so low the doctors wanted permission to sedate her and place her on a
ventilator. Between gasps, Lora shook her head, “No.” She did not want to be
placed on a vent.
But my sister was her power of attorney and her health
care advocate. She called me to ask if there was anything she could say or do
to convince Lora to sign the consent form for artificial ventilation. In other words, for life support.
As luck would have it, Patti and Lora had
discussed the issues surrounding life support again and again over the years as
each of them took on the care of their aging parents. Lora had made it
perfectly clear that she was deeply and fundamentally opposed to it. Not that
it mattered when Patti agreed to serve as her power of attorney. Surely, they
joked, the issue would never come up between them. Until this. Until now.
While the doctors
hovered over Lora, preparing to intubate her at a moment’s notice, Patti and she confronted the demon together—consent or certain death. With precious
minutes ticking away, Lora ultimately agreed to the ventilator rather than
die.
I started clearing my
schedule for the next few days. I packed a bag and gassed up the car. In case
things went sour.
Tuesday, June 23
Early this morning my sister called me in tears. Lora was in the Intensive Care Unit, and even so, the doctors were
confounded by her condition. Despite the fact that she was on a ventilator,
they couldn’t get her oxygen levels to come up. They were worried about her brain
function should she recover. They hinted at the fact that if things didn’t
improve soon, she might not make it.
I don’t think either of us really heard that.
Maybe it was a hedge against fate, but we started to discuss some of the things
that needed to be done until Lora made it home. Someone had to collect her
mail, pay her bills, and check the messages on her phone. Her parents needed to
be informed. Her elderly father had recently undergone surgery and was still
recovering, and her mother was frail and confused, so Lora had spared them
the news when she went to the hospital the night she got sick. Someone had to
take on that task. And the doctor needed permission for a DNR order if the
decision was made to withdraw life support. That task would fall to Patti as the
chief maker-of-decisions that no one but God should have to make.
Patti called back later to say that Lora’s
oxygen levels had stabilized. Her fever was down. They seemed to have a plan. I sent a prayer of supplication to Saint Rita, Patron Saint of Hopeless Situations. I swore that if Lora recovered I would
cast my spiritual skepticism, doubt, and resistance overboard, and sail forth
on pure unadulterated faith in God’s goodness and mercy. It would take a
miracle.
I alerted my husband, gave the dog a pat on the
head, and I left, not as a physician to intervene in Lora’s care, although I could have, but to be
present for Patti during the days of uncertainty, fear, and exhaustion that are
sure to follow.
Thursday, June 25
Where do I begin? I am sitting in front of
Winthrop University Hospital waiting for Patti and several of her friends to arrive, and for
ICU visiting hours to begin.
Lora has developed a condition called Adult
Respiratory Distress Syndrome. Even though her general health is good and she
is only forty-six years old, the prognosis is dismal. No one really understands
why some patients succumb to ARDS while others recover, nor is there much doctors
can do to treat it. Nevertheless, they’ve brought in all the big guns—the
ventilator, the heart monitors, the high tech medications. She looks like a
marionette suspended from the intravenous lines entering both arms and
the side of her neck, a PICC line, a catheter, and now a rectal tube because,
of course, the antibiotics have caused a rip-roaring case of diarrhea. She is
literally asleep in the eye of the storm while chaos churns around her.
This morning I educated
myself about ARDS, ECMO (extra-corporeal membrane oxygenation), and nitrous
oxide sedation as well as a few mind-body-spirit strategies that can be used with ICU
patients who are in an “induced coma”--heavily sedated so they don’t fight the
ventilator, but still somewhat aware of their surroundings.
The outlook is
uncertain and unfavorable. At best, ARDS patients can expect to spend a year in
rehab, and even so complete recovery is unlikely.
We are just starting to
wrap our heads around all this, trying to make sure we haven’t missed anything.
In a futile effort to maintain some thread of optimism, we have assigned
necessary tasks. Who will answer her messages? Who will watch her house? Who will
mow her lawn? We have discussed when and how much to disclose to her elderly
parents who won’t be able to bear any of this. She is their only child.
All of that, of course,
is easy compared to what is going on at Lora’s bedside. Here we are tending
to her with all the prayer, energy, and intention we can muster. Whether it
registers or not we will do every positive thing we can to invite healing and
strength to her.
Today I leaned in and
whispered into her ear, “Lora, this is Jan. This weekend my daughter--you
remember her, right?--is offering homage to the sun goddess for you. She is
sending “metta”--healing energy through meditation--and I come bearing warm puppy
breath. Never underestimate the healing power of warm dog breath, isn’t that
what we always say?"
Today they placed Lora in isolation. Now we can’t get close enough to talk to her or to touch
her so she knows we are near. Instead, we’re piping in her favorite music, and
watching through a window as her chest rises and falls in sync with the
ventilator.
A box full of cards,
handmade by the students at her school, arrived today, a touching testament to
a beloved teacher. I started a novena to St. Rita and I continue to abstain
from coffee as a form of sacrificial prayer on her behalf even though I am
sorely tempted to capitulate out of sheer exhaustion.
I am reminded of all
the souls around the world and all through time who have suffered like this.
Our pain is no different from theirs, no worse, but still, it is extraordinary. Thankfully, Lora is
surrounded by people who love her. Lord, have mercy on those who aren’t--the
lonely and abandoned, the hopeless and forsaken.
Reality is beginning to
sink in. Out of the shock and confusion, we have had to set aside our need to
understand how this could have happened. How God could have allowed it to
happen, willed it to happen, even caused it to happen. Why this, why now, why Lora? We have sorted through the woulda-shoulda-coulda’s that typically get
us nowhere. (We should have known something was wrong. We could have taken her
to the doctor right away. We would have made her go sooner, if only we had
known how sick she was.) We have risen to the challenge of providing courage
and support to one another when none of us has anything left to give. We pray. We
fret. We take turns running out for coffee and donuts, for pizza, for fresh
tissues. We watch the clock. We wait for the doctor to stop by, for updates on Lora’s condition, for any scrap of hope.
All this goes on while she sleeps. Thankfully, she sleeps. Her color is better now. Her cheeks,
rosy. We stand at the window outside her isolation room and watch the steady
rise and fall of her chest, her little pink toes sticking out from under the
sheet, all we can see of her. All we can know of her.
Friday,
June 26
There are no words for
this. To describe what it feels like to watch a friend die would be to pluck
something palpable out of an emotional vacuum, to recognize it, and name it for
you. Unfortunately, the only words that come to my mind are about as profound as a commercial for
laundry detergent.
I find myself casting
about for something familiar to cling to, acting as though the most important
issue in the world right now is what kind of jelly I should put on my morning
toast, when the rain will stop, whether I remembered to put my earrings on this
morning. I allow my thoughts to wander these familiar paths, and then I stumble
over the reality of it again. It won’t go away.
Saturday,
June 27
Outside the hospital,
life goes on as usual. Traffic is backed up with people impatient to get to work, or the
mall, or the gym. A siren marks the arrival of another critical case. A couple
of lab techs grab a smoke in the shadows near the side door.
Lora is still with
us. The days slip by, the memory of them lost to her forever. While we wait, we
keep ourselves busy. We pretend to be optimistic. Every so often someone cracks
a joke which, come to think of it, should be impossible. Still, Lora would
have loved that.
If only she knew what
was going on around her. If only she could see the brave smiles, the sudden
outpouring of tears, the embraces that are meant for her. Strength and
weakness, courage and fear, hope and despair alternating like the pendulum on a
clock. If only she could breathe in the outpouring of love for her, of longing
for her. If only she could
open her glacial blue eyes and snap off some sarcastic commentary on this whole
damn situation.
Sunday,
June 28
Back up to last night.
At close to eleven o’clock, we finally had a chance to speak with Lora’s
doctor. Well, one of them, anyway. We’d been waiting for him all evening. We
were concerned because her condition seemed to be deteriorating, and there still
was no DNR order on her chart. Not that we wanted to rush into it,
but we needed the order to respect her wishes, if it ever came to that. When the doctor
explained that Lora's chances for recovery were less than 5% we downshifted
into harsh reality mode. She is not going to make it through this, barring an
outright medical miracle which, of course, we’ve been praying for all week
long.
Monday,
June 29
Late last night, after
I’d closed my journal for the day, the doctor came back in. He called us into a
small dark room where he broke the latest bad news. Lora’s kidneys were
shutting down. They needed to make a decision about dialysis. Without it her
lungs would fill with fluid and she would suffocate. She might linger for a few
days longer, but without it there was no hope. What the hell? Even with
dialysis, there was little hope for her. The word “no” hung in the air like the
blade of a guillotine. No dialysis, no hope, no choice.
The end is in sight
now. The game plan has changed from stubborn optimism, to wishful thinking, to
total surrender. All that is left is to unplug the ventilator.
Tuesday,
June 30
There are no words for
this. Nothing that plumbs the depths of such despair. Nothing that describes
the pain of letting go or reveals the human spirit the way it unfolded today.
Today we welcomed a
brave procession of Lora’s closest friends and coworkers, as well as some of
the parents of her students who were grieving on behalf of their children…none
of whom have had time to process this turn of events as we have.
There was fifteen
year-old Paul, howling and wailing in the stairwell like an abandoned wolf pup
under a full moon, so much did he love Lora.
And Lora's father, George, at age 84 trying to process the news that he is about to lose his only
child. His eyes searching through his memories, then searching the room, then
turning inward again with an occasional shrug of his shoulders, the silence
punctuated by simple wisdom and the naked truth: “She is so young.” “It isn’t
fair.” “She had so much to live for.” “I can’t feel anything.” “There is
nothing to think about.” “I have nothing
to live for now.” He bowed his head, and
wept quietly and courageously against his helplessness. Then, he said good-bye
to her.
As frail and confused as Lora's mother, Maddie, was she made it clear she wanted to be at her daughter's funeral. Whatever it took.
At the appointed time, I
joined a few of Lora’s closest friends--Patti, along with Peggy, Karen, and Lil
(better known among us as the four cockles of her heart)--to say our final
goodbyes. Outside the room, husbands stood guard like empty vessels waiting to
collect their wives’ grief, while five courageous women donned masks and gowns
and gathered around the bed. One by one the
nurse disconnected the intravenous lines, removed the EKG wires and the oxygen
meter, and pulled the sheet up to Lora’s chin.
I’m not good at
spontaneous prayer, but the others looked to me for it so I did the best I
could in the moment:
“Heavenly Father, with
this prayer we surrender Lora’s soul into your eternal keeping. May our sorrow
recede like the tide, and may each of us find some special way to keep her
spirit alive in our hearts and fully alive in the world. For this we pray: Thy
will be done.”
The nurse hit the off
button and gently slipped the tube out of her throat.
Amen.
Tomorrow we will swing
into action--planning the services, tying up the legalities, te
and guide him among sudden betrayals
and tighten him for slack moments.
'Life is a soft loam; be gentle; go easy.'
And this too might serve him.
Brutes have been gentled where lashes failed.
The growth of a frail flower in a path up
has sometimes shattered and split a rock.
A tough will counts. So does desire.
So does a rich soft wanting.
Without rich wanting nothing arrives.
Tell him too much money has killed men
and left them dead years before burial:
the quest of lucre beyond a few easy needs
has twisted good enough men
sometimes into dry thwarted worms.
Tell him time as a stuff can be wasted.
Tell him to be a fool every so often
and to have no shame over having been a fool
yet learning something out of every folly
hoping to repeat none of the cheap follies
thus arriving at intimate understanding
of a world numbering many fools.
Tell him to be alone often and get at himself
and above all tell himself no lies about himself
whatever the white lies and protective fronts
he may use against other people.
Tell him solitude is creative if he is strong
and the final decisions are made in silent rooms.
Tell him to be different from other people
if it comes natural and easy being different.
Let him have lazy days seeking his deeper motives.
Let him seek deep for where he is born natural.
Then he may understand Shakespeare
and the Wright brothers, Pasteur, Pavlov,
Michael Faraday and free imaginations
Bringing changes into a world resenting change.
He will be lonely enough
to have time for the work
he knows as his own.
~Carl Sandburgnding to George and Maddie, holding space for everyone’s grief as word spreads and
reality settles in…and in…and in.
Patti’s dog knows
something is wrong. Normally exuberant, even Mooch is circumspect tonight,
quieter than usual, attentive but distanced. He was Lora’s favorite, and
that’s saying something considering there wasn’t a dog alive that Lora didn’t love. He seems to sense that this is not the time for play even though
he can't possibly know why. Or does he?
Friday,
July 3
I’m still trying to
process everything that happened last week. I don’t know if I ever will. Even
though I have attended the dying many times before, I find that every instance
is uniquely sacred. I have been reflecting on the transcendental power of
friendship, of pure love, and the unimaginable strength it supports. Aside from
the confusion and grief we experienced last week, what stands out for me
is the rock solid courage and will that Lora’s friends summoned up from some
unknown reservoir. I bow down to the four women for what they took on in order
to respect and honor Lora’s wishes. At times like this we are connected with
the suffering of all mankind. When someone needs to lean on us, we learn to lean
back, and that’s the only way we remain standing when it is all over. All I can
say now is I hope all these promises about heaven and life-everlasting are
true. If not, this was a waste of a beautiful soul.
At the last minute we
had to change the venue for Lora’s services in order to accommodate everyone
who wanted to be there--her young students and their parents, colleagues,
friends and family. I was deeply touched but not surprised by their devotion to her, given her magnetic personality and boundless sense of humor, her
energy, kindness, and gentle spirit.
I was also touched by the
Rabbi’s first reading at the service. Afterward I asked him
where I could find it. He showed me a Reformed Jewish prayer book that held the
prayer. Then right before my eyes he opened the book, tore out the page, and
gave it to me.
“You should have this, then,” he said.
O God of life,
amid the ceaseless tides of change
that sweep away the generations,
Your living spirit remains
to comfort us and to give us hope.
Around us are life and death,
decay and renewal,
the flowing rhythm that all things obey.
Our life is a dance to a song we cannot hear.
Its melody courses through us for a little while,
then it seems to cease.
Whence the melody, and whither it go?
In darkness as in light,
we turn to You, Lord, the source of life,
the answer to all its mysteries.
Can it be that we, Your children,
are given over to destruction
when our few days on earth are done?
Or do we live on in ways we cannot know?
Only this we have been taught,
and in this we put our trust:
from You comes the spirit and to You it must return.
You are our dwelling place in life and in death.
Wednesday, July 8
Today I met with my
pastor. Many people are suspicious of Catholic priests, especially considering
the recent scandal in the Church, but the ones I know are bright, dedicated, and
doing the best they can to live up to their vows. I trust this man. And
something is bothering me. This is the problem. I’m worried we did the wrong thing
when we made the decision to take Lora off life support. And I feel
especially guilty because as a physician, the others looked to me for guidance.
So the decision kind of rested on my shoulders. I have this nagging thought
that, had we given her a chance, she might have pulled through. God might have
intervened to save her life. He has the power to do that kind of thing, right? But we
took the power out of his hands. What if we were wrong? What if I was wrong?
I’m dying inside.
I explained the
situation as well as I could. He was nice enough to reassure me that this
was God’s will. That God put me there to help the others make a decision that
would have been impossible for them without my understanding and advice. That
knowing it would have been Lora’s choice, we did the right thing. Still, I will never be
sure. I guess I still believe in the possibility of miracles. I hate to think
we robbed Lora of hers.
I chose to share this piece because this scenario is playing out in emergency rooms and intensive care units all over the world today. With one difference. When Lora died, we were present for her. We were present to support and comfort one another. We surrounded her bed shoulder to shoulder, and heart to heart. When Covid-19 patients enter the hospital, they are surrendered into the care of total strangers, people who have no knowledge of their character, their spirit, or their genius. Many of them die unattended. Friends and family lack closure. All they have to offer are tears.
All that remains is the story of a life.
"Every secret of a writer's soul,
every experience of his life,
every quality of his mind,
is written large in his words."
~Virginia Woolf~
jan
