Broken System

In 2017, my life, and the life of my sister, dramatically shifted, and it had nothing to do with cancer.

We’d planned to visit our parents that Christmas. They’d visited us the year before, and we hadn’t seen them since. We decided to make the 14-hour drive rather than fly because our old pug couldn’t handle flying. Since we headed out on December 23rd, we chose to drive straight through. I didn’t want to miss any of Christmas Eve, which I enjoy so much more than Christmas day. We were used to these long drives, having made many trips back to visit our parents over the years. The bad roads and weather began about an hour outside our hometown, and while my hands were clamped on the wheel, knuckles white, my sister received a text that our mom was in the hospital. No one had mentioned she was even sick. We drove the rest of the way in silence.

When we pulled up to the local hospital, a nightmarish place, it was 4 am, and I ran inside while my sister stayed with our pug in the car. My dad ushered me into the ICU, where my mom was sitting in a chair, hooked up to oxygen. My aunt was there by her side. I immediately started crying. I couldn’t help it. I’d never seen my mom like this before. I hadn’t had time to prepare. I learned my mom had pneumonia. She’d started having trouble breathing earlier in the day but put off going to the hospital because she wanted to see her kids.

She was moved to a room shortly after my arrival, and my sister and I took turns sitting/sleeping by her bedside so she was never alone. Even though she was out of ICU, the sense we got from the doctors was that it was still touch and go. We learned that she had four serious diseases that made her more susceptible to infections and viruses, diseases that would significantly decrease her life span. It was clear to my sister and I that we needed to move back to help care for her and to spend more time with her.

The care in that hospital was mostly abysmal, with nurses dismissing moments of cognitive decline and hallucinations caused by the CO2 buildup in my mom’s blood and missing so many other things. A couple times, the nurses and doctors asked my mom to sign things and agree to things when she couldn’t even tell them her birth date. This made us feel uncomfortable leaving her alone for any amount of time. But eventually, she improved and was discharged.

I flew back to discuss all this with my employer, but I was only back one day when I got a phone call from my sister at 9 or 10 at night saying our mom had crashed again, and they were back at the local hospital. My sister said our mom wasn’t responding to painful stimuli, and no one seemed to care. We agreed she needed to be transferred. The doctor on call tried to prevent the transfer, saying her insurance wouldn’t cover the move, but he was apparently not prepared for the wrath of my sister. She called me again soon after to tell me they were in an ambulance and headed to a larger, better hospital a half-hour away. When they arrived, a team was at the emergency entrance to meet them. I hopped on the next flight, and when I arrived at the hospital, the difference in care was like stepping into another world. I know beyond any doubt that if my sister hadn’t demanded a transfer, the other hospital would have let our mom die. This new team knew exactly what to do and made us feel comfortable and welcome.

My mom had crashed because she caught the flu, either at the local hospital or directly thereafter, and it had caused the pneumonia to rage back. We spent New Years watching the snow fall from her ICU room. She was eventually discharged, and my sister and I moved home to help her recover, saying goodbye to so many things. My beloved employer agreed to allow me to stay on in a remote position. Most of my work was done via computer anyway, but this act of generosity has really been a lifesaver.

Once my mom had recovered enough, my sister and I found our own place. And then came the cancer. And then COVID-19. Since both my mom and I are in the high-risk category, our households are in isolation. We live just down the street from each other, but it’s like we live 14 hours away again. Every day, I watch the numbers on the news climb, read stories from the frontline that make my heart ache, read about the communities already oppressed by this system get hammered even harder, read about the people dying without their loved ones by their bedside. I worry about my dad and aunt, both essential workers. I worry about my friends in the Bay Area. I read a story that, if push comes to shove, cancer patients like me will not be given a ventilator. I read another story about Trump trying to allow healthcare providers to refuse to treat trans patients. I shake my head at the pictures of the lockdown protesters and their hypocrisy. My place and my mom’s place in this world grows more precarious every day.

I recently learned that a friend from high school is on the side of the lockdown protesters. She posted on Facebook that people who stay home and wear masks and gloves when they go out are afraid and people who go about life as usual are not afraid and that freedom is the solution to the pandemic. When I challenged her on this, she said that she and her family will do whatever they please, and that those who catch COVID-19 or some other illness (tumor was on her list) and die…well, that’s just her god’s will. So casually she made her god our murderer so she doesn’t have to take responsibility for her actions.

Am I being too harsh? It’s day 4 of my second cycle of chemo. I’m practically bald. I miss our pug, who passed away the same day I received my definitive diagnosis. I miss my family and community. I’m putting my sister, who has to do the shopping and most of the cooking and cleaning during the hard days, through hell. I’m thinking about all the things I may never get to do again if I don’t make it through this treatment or pandemic while privileged, ignorant brats whine about things they only have to put on hold for a while. People who will defy public health guidelines and usher in a second wave of infection, making this worse for all of us, calling their selfishness freedom. I feel a little harsh.

Here’s a messy, harsh poem I wrote while my mom was in and out of the hospital.

red,white,black&blue

home/hospital for the holidays
going from a 14-hour drive
to 12-hour shifts
to be there with her
to be more of a nurse
than most of the nurses
who follow their routine
check their boxes,
pass judgment
on the value of a life
based on size, lifestyle, history, family
missing the important stuff
the poorly attached oxygen monitor—
basis for all decisions—
the soiled sheets
aggravating secondary infections
the sudden cognitive decline shouting
something isn’t right here
making small decisions
and realizing after they were big
life or death big decisions
thinking why are we the ones
to catch this, to notice
thanking our lucky stars
just in time
thinking god, I’m too young for this
just like my mom was and dad
holding hurricane-force feelings in suspension
because I have to function
this is life and death
learning to ask them to check
the machine’s accuracy
enduring their eyerolls and smirks
and oops I forgot
to insist, to keep insisting
to be that bitch in ICU
that bitch on floor 2
that bitch
seeing the bad nurses’ touch soften
with a sudden audience
wondering/worrying
about the patients with no one
by their bedside
lives that end in silence
eyes shining in the dark
so grateful for the good nurse
that pulls all our tired bones through
that allows me
an unhurried
bathroom
and food break
the gift
of washing my hands
for a full minute
in warm, warm water

and then the homecare
rejecting the add ons—
the ones assigned to check in
the ones to help around the house
the ones that judge—
that keep that bill rolling
giving them a chance first
because they must be more qualified
and then seeing the coldness of each
interaction, the closed ear, closed heart
how a life can be a body and not a person
an object to move and prod and talk over
without a thought to the mind
how a life can be a condition and not a soul
worried that my presence
is the only prevention
against verbal, emotional, even physical abuse
cold eyes that mock
cold hands that are rough
against fragile skin
every word but dignity
or pride or vulnerability
in each callous remark
the absence of the recognition
that this will be them someday
their mother, their father, their sibling,
their husband, wife, lover, partner, friend
the absence of grace
of humility
in the face of death
the threat of that debt

getting stronger under a storm cloud
the high of meeting blood sugar goals
the low of oxygen dropping suddenly
in the middle of the night
not having the necessary equipment
because it takes so long for the insurance
to approve it
having to wait for a company to decide
if you live or die
if those most precious to you
live or die
the threat, constant,
of another hospital visit
exams, putting on creams,
monitoring dispersal and reaction,
taking inventory of meds and supplies,
the showers, the cleaning, the cooking
the cheering up, the being tough through tears,
the being weak through clenched teeth
“I’m doing good, we’re making it through”
because what’s our alternative

swallowing fatigue and frustration
doing laundry, dishes, cooking,
caring for the pets,
picking up the groceries,
locking the damn door
researching muddy systems
to alleviate stressful situations
wellbeing a commodity in this land of the free
a privilege and not a right—
the pursuit of happiness—
no matter what a document says
navigating the pay to play
emotional and even physical safety
so expensive, such a privilege
the gratitude for the job
that allows me to be here,
to do this,
to hold that precious hand,
and kiss that precious forehead,
to monitor and encourage
the gratitude for the partners
the tender hearts that keep my hope
for our species hanging by a thread

and on the news the politicians argue
whether her life is worthy
as if they’ve never sat by a bedside
never saw red ink on white paper
that determines life or death
never met a woman like my mother
who was there
to bathe, feed, comfort, care
this woman who destroyed her body
giving her children life,
a present, a future
this model citizen
who smoked what they told her to smoke
who worked when they told her to work
who bought what they told her to buy
and ate what they told her to eat

Sitting now against the wall of my room
a wall soaked in memories
listening to the “mommy monitor”
wondering if she’s sleeping
or if she’s awake and scared,
eyes shining in the dark
unwilling to say help
because she doesn’t want to wake me
to be a bother or a burden
both of us waiting for dawn,
waiting
for the house to wake
waiting for this country to become
everything they assured us it already was
wanting to go back to that little child that I was
and pull the hand away from that quivering heart,
throw those rote words back
at red-soaked and white-washed bars,
those cold, cold stars