An Answer to Alivia's Question: How do you live a year like a love letter? 1.3.24

Blue to purple to yellow green

I grasp the reflecting glass

And kiss her for the first time

and again and again, I say

I'm sorry it took me so long to get here

but I *am* here now, present within you

Let's try again, cry again, laugh again

So we might one day

smile again, love again, live again.

Hi, Mom

You call before bed

ask about your mother's day

her oxygen saturation is 87% 

on 100% FiO2

peep of 38 pressure support of 25

she's turned on her stomach

and I tried to alternate sides of her face

to prevent the sore from building on her cheek

eating away at the apples, leaving black eschar

over a mash of necrotic tissue underneath

but the demand of that alone--

of pulling one arm back and down

and swimming the other one up

tanked her reserves so much

we thought she'd be brain dead--

there is no runway left

her day isn't going so great

she will probably die

you won't get to say good-bye

and if somehow her body survives

we can't guarantee she will be in there

so I simply say:

The good news is: there is no change

You can infer

The bad news is: there is no change

You sigh, not out of impatience, but hopelessness,

helplessness, exhaustion from worry, from grief, from anxiety,

from imagining a life without her

If the phone in her room is working

I can try to transfer you--just give me a minute

because I have to get some medications together

and gown up before I go inside

so the phone will ring for a while.

Don't hang up.

Hello?  Are you still there?

I shout, slowly, chewing each syllable

it's hard to hear through two layers of masks

and a shield

over vents

and pumps

and alarms

and the muffled voices outside the 

glass sliding door

enclosing this 

pitch black death incubating chamber

Can you hear me?

I'm going to put the phone by her ear

and just so you know I'm going to be in here

giving her medications and taking vitals 

and you may hear some beeps and honks

but it's okay, it's just me, suctioning her 

and working the pumps...

I lay the phone by her ear 

speaker between the pulse ox probe

and the internal jugular triple lumen

that is pumping medicine to keep her sedated

so she won't fight the vent

and fentanyl, so she won't remember

and neo, and levo, and vaso 

to keep her brain from dying

and argatroban

to try to keep her from clotting and dying

receiver by the inline suction

Hi, Mom...

Purgatory

 Is there a word to describe
the mixture of shock and elation

and grief a nurse feels

when aa Covid victim--

trached for air

sedated for lung compliance

foley for urine--maybe

flexi for diarrhea

Quinton for dialysis from Covid-kidney failure

central line for heparin, propofol, precedex, fentanyl,

levo, vaso, antibiotics, blood

A-line to watch their heart and pressure

restrained on the off chance

they wake and come rip roaring to life

left for hours

and days

and weeks

maybe months

in a black hole of a room

in the basement of the hospital

in a row of isolation rooms

in a maze of rows

each one, a cell of ceramic and drywall, and ceiling tile,

alone for never ending eternity

aside from the hourly rounds

medication administration

suctioning

oral care

and the occasional bath--when the

waveforms and data on the monitors

tell the nurses their oxygen reserves

can withstand being turned

from one side to the other

and back again,

all but assumed a lost cause,

covered in deep tissue wounds and eschar

from bed sores from being bed bound

and prone

because nothing matters more than

airway, breathing, circulation--

feels your hand on theirs

and suddenly squeezes back

and you realize

My God.

There is a person in there.

Still

Somehow

Awake

Clinging to your hand

So stay in the darkness

praying the mask you've worn three days in a row

won't snap off,

the makeshift shield a friend's friend has printed

won't flip apart

standing in the stifling heat in the plastic bag

protecting your skin from the plague,

every second you stay

a risk to your life

as their gasps vent aerosolized Covid

out of the back oof the machine that is 

forcing breath into them

and try to tell them,

You are not alone

I'm still fighting for you

Stay with me

But you don't know Spanish

so the only thing that comes out of your mouth 

is the lie:

Está bien, papi.

How Are You?

How are you?

It's such a simple question

I used to joke, "Still alive,"

which, is true.  I am still alive.

Covid didn't get me yet.

Soldier's gonna soldier.

But those words used to float

on a gust of spunk

and now, they drag with exhaustion

I no longer can hide

I don't want to talk to you--not to you

not to anyone

I don't want to be here.

I don't want to be conscious.

How do I explain why the answer eludes me--

that there are no words to describe
the ghost of willpower
moving through motions
living without focus
the brief moments of agonizing grief
breaking through
like suddenly coming to
in the darkness, in the suffocating
murky air of the stifling summer July morning
when the breakers have flipped
and the A/C has stopped

how can the air be so heavy and wet
and yet there is the persistent grittiness of the eyes,

the incredible effort it takes to dredge up the tongue

to say anything at all
in your bedroom, all alone
in your apartment complex
silent, sitting empty of neighbors
who have lost livelihood
and home

How do I explain the loneliness of touching
hundreds of people in the bowels of my hospital
but I have been deprived of
the feeling of being touched for so long
I've forgotten what it means to long for touch
like an emotional paradoxical sweating response
I am so cold I am hot
the words that pour out of me come like
molten metal from an assault rifle
tearing into you
when all I want is to say
"Please stop hurting me.
Please love me--
please show me you love me.
Why don't you understand
what you are doing to me?
Why do you need me to tell you
this is wrong?"

I miss touch, but cannot stand your presence

and can remember joy and longing,

yet feeding hunger is not the same as taste

I don't know when I am full--

so I consume things
film, philosophy, science, food
until I am so full my stomach aches

almost as much as the empty gnawing in my chest

frustration and temper makes venom I cannot tame

because I can only sleep in bursts of 2-3 hours at a time

just enough to keep me conscious, 

but only just

I don't have any more in me

when I stand my feet burn

I lie back down 

but my bed brings me pain

sleep brings me Covid Rubik's cube puzzles
varied as Pantone shades

wake brings me apathy at best

annoyance at worst

I know the me that raged and cried and cared

is drowning and 

I should want to save her

but I can't--

I can barely drag myself from day

to day to day

which day is it

remember when you knew there was

an end
a weekend
a holiday
a break and you

could choose to rest

or to push on while everyone else rested

but now there is no choice

just disaster after disaster

there are so many things broken
so many floors filled with broken people
shattered bones
drowning lungs
failing hearts
no sooner has the death toll of the
pandemic chapter in Chicago tapered
when the tapers set aflame consume
the flesh of more bodies

There is never rest
(why do people keep trying to kill
each other and themselves

can you please just stop breaking shit
for a day

just give a shit about someone else
for a day

I don't know how to make you
care about the person next to you

I don't know why you don't care
and frankly I'm so goddamn tired

I don't care anymore
You are so far broken I don't think
there is a 'fixing you' now or ever

but can you just not be so hell-bent
on blowing up the fucking world

I am running out of windlasses
and blood and plasma

if I knew how to do anything else--
if I were good at anything else--
I would walk away

what did I ever do to you
that you would put me through this)

just eternal labor.

I used to feel empowered 

but now I find myself indifferent 

I feel the dust of the dead embers of anger

I feel--that this is pointless

that I was foolish to think there was

any fixing this world

even this part of it

or even my small corner of it

It's so fucking broken

I don't even want to try

I don't know how I ended up here

again

I have no more tears to cry

no more care to give

no more hope

what do you do when the goddamn world

doesn't want saving

I see why people put a bullet in their mouths
what other option is there
when you look ahead and see no end
to this road

I will never buy a gun
I know I am not strong enough
to hold those whispers at bay

The last time my eyes burned like this
my heart ached like this
I lay sobbing out the words,
"I think I'm dying," to my doctor
"Please don't make me do this.
I don't want to fight anymore.
I can't do another round--it'll kill me."
He said that I didn't have to fight.  It's ok to stop.
So I wiped my eyes
and stood up
and walked into my own grave
anyway, laid down and hoped
for resurrection--
because what option did I have?

I know I'm in danger.

So I pour out all my 

small batch, single barrel

numbing liquid

give away the bottles--

hundreds of dollars worth of 

carefully curated medicine

because I know if I sedate myself

any more I won't wake up

Is this all there is--

That's a lot to say
and not enough words to say it

(plus, that's not what you want to hear--
Your eyes go blank, your shoulder slump
this is more than you bargained for
I would have caught those body cues faster
if I weren't so goddamn tired)

"I'm still alive," I say, "And you?"

Life and Love: Acceptance in a time of Covid-19

It has been a long time since I've written anything resembling an academic, hamburger-style essay, but this is a conversation that requires clarity.  I have read several posts on social media about grief and trauma, and practicing self-love, or practicing discipline, which is relevant to the situation, but in the middle of the chaos of this traumatic event we're experiencing, I want to draw you aside.  We, as a species, are not doing well.  If I had to compare it to a patient, I'd say we're inserting an emergency airway, watching the screen throwing SVT, reading labs that say lactate is 8, hgb is 3, pH is 7.3, INR 7, EBL is 2 liters and going with blood and 0.9 NS wide open through IOs, hanging pressors, placing a fem art line, and getting ready to start CPR if the adenosine doesn't work, but that would all be assuming we had supplies and manpower--and we don't.  We don't have the robust support we need.  We don't have endless supplies of adenosine for the PSVT.  We don't have paddles.  We don't have tubing.  We don't have enough blood, or ffp, or platelets, or phytonidione, or vaso, levo, norepi, or epi.  At this point, I would be looking at my attending and expecting them to send their resident out to speak with the family about their options.  I would expect this conversation to have already taken place hours, if not shifts ago, and it's not because we're hastily trying to pull the plug, but because in the center of all of this is a human being who should have the right to dignity and respect and comfort in their last moments if that is something they would have wanted.  I know this conversation is hard to have, but I love you.  You don't get grief without love: love of your lifestyle, love of your family and friends, your freedom, your identity, your integrity, your city, your country, the species, the person attached to that vent, etc.  That is why I am grieving.  Even though we are, most of us, in my circle, okay, and alive I am grieving, and I only recognize it because I've lived it, but even in the middle of grief, I we still have life to live, decisions to make, and autonomy and dignity to preserve.

The concept of the Kübler-Ross' Five Stages of Grief are not new, but some of them may be difficult to recognize.  Denial: It's just the flu.  Or just flat out panic, or that hum of fear, anxiety, and uncertainty that never goes away.  Anger: What is this administration doing?  It's the fault of the wet markets.  The CDC is a mess.  How is our stockpile such trash? Etc. (I spend the majority of my time in this stage.)  Bargaining: Maybe there's a reason why this all had to happen.  Let me make cloth masks for everyone.  What if I'm just going out to a few places, or having a BBQ and we all sit 6 feet apart?  Depression: Overlaps with anger in that there is a lot of feelings of hostility and the repackaging of the fight of flight response into fawning.  Acceptance: Even if you reach this stage, you rarely stay here, and the stay is rarely peaceful.

I say this because I have personal experience.  From the moment I beat my doctors to my own cancer diagnosis, throughout preparations for treatment, through every cycle of chemo, and for all the days afterwards I have fought what we are feeling as a nation now.  I know what it is to fear the looming sight of a hospital and to, despite my best efforts, find my lizard brain kicking in and spiraling into a panic attack while I move towards inevitability.  I am intimately aware of the blend of feelings of fear, uncertainty, grim resolve, apathy, disassociation, anger, irritation, and indifferently pressing on, and suicidal ideation wildly swirling together like ingredients in a highball glass.  If God exists he's a shitty mixologist, but this is our drink, bitter as it is, and we have decisions to make, and autonomy and dignity to preserve.

So you should sit down (metaphorically--stay home, have this conversation by phone or email or video chat) with the person or persons who you trust to carry out your wishes.

I know most of you are safe and warm and fed, and you have governors who are working hard to protect you, but Covid-19 is here to stay, and in the long war to attain herd immunity, a lot of us will die.  The WHO estimates the mortality rate of Covid-19 is about 3.5% globally [1].  So far we haven't reached that rate in the US.  We're hovering around 0.027% if my math is correct [2, 5], although the veracity of that data is yet to be proven [3, 4], which is an incredible testament to our nation's medical and emergency staff, as well as a huge amount of credit to those of us who are staying home and observing social distancing.  Regardless, I had a sobering moment this past week thinking about you and realizing if not today, if not this cycle, there is a possibility one of your voices will fall silent in the next 16 months.  Life is full of fatal surprises.  GSWs, MVAs, MIs, burns, and strokes still roll through our doors--and once you enter, you are alone until we release you back to the living.  It is not a good time to have to be intubated.  Have the conversation with your person, soon.  Today.  Figure out what you want to do should you find yourself at that crossroads.  Here is a link to the Illinois advanced directives pdfs.  I know it's scary.  It took me months and several attempts and stall outs before I completed my advanced directive.  Know that having advanced directives is not a sign of giving up.  It means you have demonstrated love to those closest to you by taking the decision--and the associated guilt and agony-- out of their hands and with any luck, that will be one less thing they will have to carry when the time comes.

[1] https://www.livescience.com/is-coronavirus-deadly.html
[2] https://www.cdc.gov/nchs/nvss/vsrr/COVID19/index.htm
[3] https://www.washingtonpost.com/investigations/coronavirus-death-toll-americans-are-almost-certainly-dying-of-covid-19-but-being-left-out-of-the-official-count/2020/04/05/71d67982-747e-11ea-87da-77a8136c1a6d_story.html
[4] https://www.bbc.com/future/article/20200401-coronavirus-why-death-and-mortality-rates-differ
[5] https://ourworldindata.org/coronavirus

Restraint (Reflection 1)

I used to think that
Cancer stole time from me
or perhaps
joy or hope or peace
or belief in a future
confidence in myself
what one might coin as
peaceful ignorance

I also know it stripped me
of insecurities
and insignificant anxieties-
that it simplified things
clarified priorities
purified purpose and
crystalized intention

But in the midst of the
whirlwind recreation of my identity
and construction of a new world
in the consequent years
of living on fast forward
trying to capture
fifty, sixty, seventy
years of living in four
I missed the subtle detail
--conclusion, really

which is this:

A part of me fell into a limbo
drowning in fear
and never resurfaced

and it was--it is--
terrifying in limbo
I clawed for a handhold in purpose
and, having never found one
latched onto action
racing to save lives
because death is concrete
medicine has concentrations
seconds are countable
titrations are controllable
diagnosis are rational
compressions are tangible

I fell into the patterns of my personality
to which
I added urgency to fabricated conviction
placed on the tracks of
confident impulse
and drove towards a destination
beyond the horizon

because ultimately,
Cancer stole from me restraint
or perhaps, I decided, with so little time left
there was no logic in exercising it

and in that instant, I lost
perspective
I lost my emotional periphery--
let it be overridden by arbitrary stakes
because

there isn't--
is never enough--
time

and in that breath relinquished
permission to meander
in daydream and imagination
to court opportunities
and remember what it meant to have compassion

urgency is related to fear
is the instigator of anger
unshackled by restraint
I am not who I wanted to be
when I look at myself, I see
someone, who by far
has more resemblance to the
myopic enemy

I have become consumed by this
furious tempo, unable to reign myself in
so I must conclude
despite all of my apparent successes

I have failed to overcome my trauma

Adrift in space, I latched
onto a spinning ring thinking
it was gravity
but it was just centrifugal force
and I am, for the first time in nearly five years
finally catching another glimpse of the context:

I must let go of my past
resist the drive to survive
if I want any chance at living

Happy 4th Anniversary

One more year to go.  The clock has simultaneously gotten louder in its ticking and faster.  And if I make it to year five?  I'm not sure what happens after.  I don't know what I'll feel after.