Chapter 2 — 😭 — Unique cruelty (personal journal entry)

Before I Go by Hay Farris 
Chapter 00002 - "Unique cruelty"
Originally Written: September 17, 2020 in reflection of prior events
Geographical Location: Birmingham, Alabama, USA
Technical Location: My Journal
Posted: October 2022

Content Warning: death, end of life prep, chronic illness, marriage, pandemic

Unique cruelty + kitchen table + world stops

It’s a unique kind of cruelty to spend 8 years deteriorating so much health wise that life becomes bedrest and wheelchairs and mobility aids and social interaction becomes so difficult your newlywed husband is suddenly full time caregiver and sole source of interaction. Having to do absolutely nothing all day long so you can sustain a surface level interaction with him after work “how was your day” “fine” “that’s good” “I’m hungry” “okay, I’m tired and need to swap out my IVs” “okay I’ll do it”

And that’s the end. That’s what I saved my entire day’s worth of energy for. 

we can’t even share a meal together.

I no longer eat.

I rarely get out of bed. I cannot sit at the table with him while he eats because I cannot even sit up in the bed while he brushes my hair.

He swaps out my IVs. He helps me to the bathroom.

But tonight,

I have saved up all my energy to sit at the table with him.

Not for dinner.

There are four of us at our kitchen table. 

Not sharing a meal.

A table that once invited laughter and prayers and love and chatter and hopes and dreams. Where we’d had conversations about our future. Our family. Our future family.

This day I have planned my energy around sitting at this same kitchen table in this moment with these strangers people new friends. The four of us sit crowded around the wooden rectangle table with little swirls carved into the legs. the table and i share this trait. my veins are visible too. before us is a tabletop cluttered with the medical litter of our lives. It seems like tonight will be especially cruel—all in one go destroying our planet and our hearts and our dreams and our bank accounts and our firm foundation. Their kind but precise and adamant guidance as we face the not so musical music feels intrusive in a way all the healthcare has not. This night feels like there are kind strangers nudging our sleepy selves toward bed. Brushing our teeth for us. Making us sign on the dotted lines between pulling back the checkered covers and saying ”night night sweet little ones. you tried your best. but sometimes the inevitable wins faster than we’d like.”

These two humans are leading us in all the wrong kinds of prayers.

“now i lay me down to sleep

I pray the Lord my soul to keep

and if i die before i wake

i pray the Lord my soul to take Please Do Not Resuscitate.”

This night feels very much like being slowly, deliberately, consciously enclosed in a tomb. The stone rolling into place.

Except theres no ressurection planned for this story of mine/his/ours. At least not when a 29 year old declares ”DNR” with a highlighter.

Do. Not. Resuscitate.

this night may be our very last supper, and i am certain i do not want to come back here.

The four of us sit around my husband’s third generation kitchen table.

our lawyer, her paralegal

my husband and I

we are gathered here tonight

not for supper

but for wills

—

we are twenty something my husband and I as we sit around the kitchen table cluttered with tpn IV supplies, medical paperwork, bills, student loans, denials denials denials (mountains of papers are disordered stacks of evidence of a life lived in the hurricane a life lived from inside the tornado how do you breathe underwater when lungs are part of your problem above water)

we are twenty something my husband and I as we sit around our kitchen table (a pass-me-down sturdy wooden table from his great aunt, and i wonder does the brief time spent with me—less than two years—make this table mine too, yours/mine/ours style? or is there a required waiting period to declare our marriage real?)

this meeting with a lawyer and her paralegal

the culmination of a lifetime

missed

a lifetime gone

the culmination of years of decline 

a young time gone

the culmination of a few weeks of 

scattered and frantic 

planning to ensure 

legal things important things

My Wishes.

(What do I wish)((how does one wish))(((when everything is pain and wishing is a thread of spider silk floating in the air)))

His Wishes. 

(stick to me like a spiderweb)((i cannot get free))(((of his my our wishes)))

my wishes for him

his for me

What is us

Who are we

wishes once ours, a thing called hope

wishes are wisps of sticky silk dis–

–solve

–asterous

–appearing

~

power

of the attorneys 

who have volunteered their time

their services (paid for by a friend)

their end-of-life package expertise

we pick a package like we did for our wedding photography

pick a package what will you want if—what do you want now—what will you want then (like we are a lab experiment. Test mice. we revolve around a hypothesis. if / then statements are all we’ve learned from this marriage experiment. But we are young. what do we know.)

We know.

We are here

The four of us

At the kitchen table

Not for dinner, but for 

last wills

testaments

and to save us from the what ifs 

But there aren’t so many of those left, we say

–the opportunities 

(to ask what if)

((to be saved))

(((to be)))

(~.~)<?3(~.~)

Two roads diverge 

because we’ve lived the worst of what ifs for so long,

The paralegal’s question is abrupt 

stuns us

what about him?

the our lawyer, sitting down with us for a last meal of sorts—but not dinner—asks next

What will you do if he dies before her?

And we are silent.

Because I’m the sick one

He’s the constant

I don’t eat

He does

I don’t drive

He does

I don’t walk

He does

I don’t stand

He does

What will I do

If he dies 

This is our kitchen table now. 

—————————

He sleeps in the other room. We tell ourselves it’s because I can’t sleep good hours and he wakes up too early and his alarms wake me and I’m a light sleeper and doctors say my body needs all the sleep I can get and there’s stuff on his side of the bed, IV medication vials, coloring books, crayons leftover from our wedding favors, medications, syringes, IV tubing, coban wrap, blankets, stuffed animals, pillows, chargers, mouthwash, pieces of a pseudo-life barely lived, 

it’s okay

the bed in the second bedroom is his childhood twin

he lies 

alone

he lies and says it’s the most comfortable bed, he loves it

or maybe that’s the truth now

certainly his past is more comfortable 

more familiar

more favorable than this life

~

vows

After 5 years together (3 years long distance but full heart)—me age 23, him age 24–we vowed til death do us part

in sickness and in health

maybe it was naive of us, but we expected to have both. not even a balance. just,

some of each. sickness and health. whatever the ratio.

we never expected

never anticipated

that death would be preferable

to the sickness life

that would swallow us whole, jonah and the whale style

(“so soon too, such a shame” they say “did you hear” “she’s still sick?” ”—days shy of their 2nd anniversary. but now it’s been years!” “shame.” ”shame. bless their hearts. let’s pray for them.” ”yes. let’s—after this.” “yes, after the waiter leaves the table. let’s order dinner first.” )

we never expected to do everything right

and have everything go wrong

~

It’s a unique kind of cruelty to show the first signs of minuscule improvement after six years of decline, specialists upon specialists, critical care, ICUs, loss of function, official goodbyes, death. Six years.

To go from discussions of palliative care to being transferred via ambulance to a nursing home.

(At age 31.)

((On our 8th wedding anniversary.)) 

(((On the day our—his—second niece was born.)))

It’s a unique kind of cruelty to get to know my husband again, to meet him now, the old man him, so old at age 34. It’s a unique kind of cruelty to be able to entertain the possibility of going out to dinner with him. To have hope enough to schedule a vacation. (Still I will have to be on IVs.) ((And oxygen.)) But a getaway! Together. Like a real couple. (Not a young caregiver and his geriatric patient wife.) Maybe we can awaken something more. Something better. (Maybe we can be roommates. Or I can ask ”how are you” again. Yes. ”how are you” would be a start. And a start would be enough. Before I go. Before he goes. Before we go.)

It’s a unique kind of cruelty to have 8 years lost of newlywed life, and then when my body—this broken body—finally tries to wake up again, 

everything stops.

E

V

E

R

Y

T

H

I

N

G

EVERYTHING

S

T

O

P

S.

STOPS.

everything in the entire world stops.

becomes dangerous

Everyone in the entire world is forced to live for a split second

For a moment

For one blink of an eye

(maybe two blinks of two eyes)

Everyone in the world is forced for a moment to live like we have for years

And yet

They cannot handle it.

But we, (yes, we. that feels right.)

We were barely able to consider the risk of hope

to taste life again.

To plan to dream

about tasting life

again

It’s a unique kind of cruelty to barely be able to consider entertaining a hope that may result in a single, tiny, taste of life again, (but just for one taste bud, we’re not greedy, not the whole tongue) only to have the microscopic air bubble of stability hovering over a single taste bud of potential—all that to have the tiniest microbubble of hope

*pop*

and to have the world complain

about how hard it is

for them

to stay in a bubble

~

“I don’t know how you do it. I couldn’t do it.”

I always thought that was spoken as a space filler 

Until the world had to stop

for months

Like I have been stopped

for years 

<— Click here for: “SHOULD’VE PICKED THE OTHER OPTION, PLEASE.”

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