It’s always difficult when you have a chronic illness, but my father never let it get him down. Originally diagnosed with sciatica, then Parkinson’s, he faced the last 10 years of his life with an even rarer degenerative neurological disorder diagnosis: Multiple System Atrophy, or MSA. Anything you read about MSA says that it is eventually crippling; after the onset of the illness people typically only live seven years. My father, due to his excellent care, lasted 19 years before his passing.
Dad took care of himself. He did exercises every day when he could. A former bomber pilot during the Cold War in the late 1950s, he spent most of his adult life as an accountant. His MSA affected his balance and blood pressure, which fluctuated wildly if he was sitting or standing.
I acted as family caregiver to both my father and mother (who suffered from Alzheimer’s and Rheumatoid Arthritis) during their later years. Over a 15-year period, I wrote poems about what I witnessed. The poems detail the struggle both of my parents faced, along with the efforts I and our hired caregiver went through.
My parents both suffered from neurological illnesses. For them, every day was different, especially at the end when they were both bed bound. I never knew if Dad would be sleeping, mumbling, constantly trying to get out of the bed, or, on the other hand, fully alert.
Yet still, my father was an inspiration to me. Just two years ago, I was diagnosed with Stage 3 breast cancer. This August 2018 will be my two-year anniversary of being cancer-free. Like my father, I try not to dwell on the negative and live each day fully. He remained strong and stoic, despite tremors and fluctuating blood pressure. He NEVER let the illness get to him, and it was a privilege for me to spend time with him in the later part of his life. The best gift he gave me was always being happy to see me. No daughter could hope for more.
Today I came across a painted turtle
as I was bicycling near a canal.
He had stopped in the middle of the trail,
head erect, all limbs exposed, waiting.
He seemed stuck in the moment,
moving neither forward nor backward,
trapped in time.
I thought of you, dear father,
moving across unstable ground,
gripping your cane and hovering
for a brief moment
before the storms set in.
Such a long way to go
and the pilot looks tired,
big engine jet, shiny, not new,
gassed up for flight in a crowded sky.
You used to fly solo
with a bomb in the back,
never gave out directions,
never cracked under attack.
A passenger now, you look out
the window, plane turns to take off.
Yet just a while ago gray eyelashes stuck,
feet stumbling, body drifting in the bushes
from a fall. Hand gnashed, skin torn,
a bandage to cover the damage. Buttonholes
fumbled, shoestrings tangled, zippers now
a struggle, hand tremoring to an unsteady gate.
Now everything is like throwing a snowball
on a well-lit fire. The ashes of your youth lie scattered.
Your pride kindles sharply, melting under stress—
you chew slowly because the pilot is tired, yet
still determined in resolution,
still awake in constitution,
you bow your head, giving forth light from within.
The flight attendant passes by
touches your shoulder with a sigh
and asks, "Are you all right, sir?"
Gyrating and with a stoned face,
you nod—a smoky, shaky dream—
a hero on a wheelchair team,
entering another cockpit world
you salute your Captain with solemn grace,
accepting all that is your fate.
The above poems are from Caroline Johnson’s new full-length poetry book, The Caregiver, which is a collection of poetry about caregiving available at www.holycowpress.org or Amazon.