Six Years with Parkinson’s Disease: Status Update

In Honor of World Parkinson’s Day….

I live north of New York City, but most of my doctors are in Manhattan.  When riding the train to Manhattan, I use the time to write poetry.  Here’s what I worked on recently, as I contemplated my health in general and Parkinson’s in particular.  I was diagnosed six years ago, and recently turned 65.

Six Years with Parkinson’s Disease:  Status Update

A brisk fall day.  A wintry day.  I ride
The train beside the river, look outside,
Gaze at the mist which hangs like gauze and blocks
The view of Jersey’s cliffs and trees and rocks.
I’m on my way to see some doctors.  One
Will snip the stitches (six!) which she had sewn
Two weeks ago to close a cyst excision.
The cyst was big.  How big?  Well, just envision
Some great bloody human eyeball, and you’ll
Get the picture, if you picture pools
Of stinky slime the white orb sat upon.
I had that cyst for years and now it’s gone.
The other doc will check my hacking lungs.
I’m coughing almost nightly.  I’m not young,
I’m over-worked and over-stressed.  And yet,
I still try to get all I can get.
I don’t sleep enough, work out enough,
My diet could be better.  But it’s tough
To lead a fast-paced life, do what you want,
Keep up on news, try all that’s au courant.

On top of that, my Parkinson’s disease
Just mucks my mind up, puts me ill at ease,
Puts me on this train so many times,
Pushes me to put down many rhymes,
Poetry that springs from inner doubt –
Doubt about how long I’ll walk about
Without support.  How long I still can function,
Accept invites to some neighbor’s luncheon.
Climb the stairs at home while holding still
A brimming cup of coffee I don’t spill.
Dress myself while standing on both legs.
Express myself precisely, not sound vague,
Not talk with halting stagger-stammer speech,
Stuck mid-sentence, words now out of reach
Of my now frozen mind.  And furthermore,
I’m scared of choking.  Every time I pour
A tall, cool glass of water, I’m afraid
The water will explode like a grenade
Back in my throat, because my epiglottis
Fails to close the trachea.  What?  This
Process (swallowing), which used to flow
Like liquid silk, is now more like a death blow
As my eyes spurt tears and lips expel
The fluid that I need to drink to dwell
On Earth like everybody else.  It’s morbid:
Drinking now’s like being waterboarded.

When things are really bad, my mind gets worse.
Forget me putting down some rhyming verse –
Instead I ponder how I can go on:
Sleep fitfully, get up before the dawn,
Slog to work and put in many hours,
Get anxious due to my declining powers –
Oh, yes, I wonder:  How can I go on?

The answer is I’m driven by the urge
To do things that forestall the creeping scourge
Of Parkinson’s.  Like writing this long poem,
Which I composed while traveling from home
On a train en route to see some doc.
(My current calendar is chockablock
With medical appointments.)  I’m delighted
When I ride the train, ideas ignited
In my brain. What joy!  And then there’s this:
I work out at the gym and feel bliss.
My weekly ping-pong lesson forces all
Of my attention on a spinning ball
I hit with slanted pock! And pock!
It spins back. Pock! My mind’s thus not gridlocked.
My open-water distance swims have banished
Depressing thoughts.  Anxieties, too, vanish
When I push myself at something that
I revel in.  Living tit-for-tat
With this incurable disease, I find
I have the upper hand, and that my mind,
While losing dopamine, still works fine
At cooking tasty meals when I dine.
Still works fine when reading books at night
Before I go to sleep.  And when I write
A blog post, story, poem or email,
I’m often pleased as punch because I nail
Exactly what I wanted to inscribe –
A sonnet, say; a blog post diatribe.

This urge to do things that I revel in
Was always there, before my Parkinson’s
Wreaked havoc on my brain, my leg, my arm.
Its source: a cosmic force which, like a charm,
Spurs all humanity to forge ahead.
Climb a mountain?  Maybe bake some bread?
Paint a picture?  Join a local band?
Volunteer to lend a helping hand
When hurricanes or earthquakes devastate
Some portion of the Earth?  Or … just create
A quiet space where people much like you
Can gather in companionship, in lieu
Of fuming solo at the constant friction
Of politicians claiming facts are fiction?

The urge to do things helps me counteract
The ravage of PD.  Now that’s a fact.

(But don’t forget that bladder urgency
Can be a five-alarm emergency!)

Pock!

– Bruce Ballard, April 11, 2018