Walking the Line – An Anthology of Parkinson’s Writing

Walking the Line – An Anthology of Parkinson’s Writing

Walking the Line – An Anthology of Parkinson’s Writing (Fall 2021 edition)

EDITED by Susan Brennan, Hal Sirowitz, and Minter Krotzer.

POETRY by Holly Thompson, Virginia Smith, Andrés Cerpa, Bill Tope, Helen Mirkil, Hal Sirowitz, Minter Krotzer, and Susan Brennan.

STORIES & ESSAYS by Brian Peterson, Sarah Beth Childers, Hal Sirowitz, Sara Houghteling, Roberta Schine, and Kevin Hinkle.

Kindling

By Holly Thompson

We learn to gather tinder—thin dry twigs
that fit in tiny fists and drop into boxes
that tuck behind the cook stove 

we learn to venture farther for curls of bark,
pine cones that will smoke, and longer sticks
that can be snapped in half if we step just right

 we learn to seek out limbs, thick
as our small arms, requiring a handsaw
or our father’s weight to break

 we learn to carry wood adults have split
stack it in even rows between two trees
and separate the seasoned from the green

 we learn to swing an ax, raise the maul
and bring it soundly down near round’s edge
across rings of growth for the cleanest rip

 we learn to recognize rot and respect knots
and sharpen the wedges and pick up our tools
when we’re done and then we learn to pull 

the cord and hum the chain through trunks
felling, thinning, clearing, hauling and
shaking sawdust from shoes at day’s end 

then, decades of wood later we retrace
from chainsaw to splitting to stacking to carrying
until we are there on our knees again

the kindling gatherers with gray sticks tight
in our gnarled fists, twigs that we release into
a blurred box for someone else to carry inside

 while we feel for their solid guiding arm

Garvey Manor

By Virginia Smith

A tiny dervish,
my mother whirled
around Assisted Living,
smiling and chatting
like a girl
running for homecoming queen. 

Now pushing 90 
she’s no longer up at 5, sprinting
with her walker to fold her clean laundry
then read the local obituaries, 
To make sure I am still alive! 
Her body’s pleasures and pains strike
their own balance these days.   

She drags herself, 
diapered and dripping,
out of bed at 10
and into her accessible shower, 
sinking into her chair,
hot, soapy water stroking
her thighs and belly,
forgetting, finally,
her life-long utility budget.

Emerging naked through the steam,
blinking and sightless as a newborn, 
she readies herself
for breakfast, 
where she will spill
coffee down her pastel polo during a cat nap,

palsied hands trembling. She marvels
to me about her colleagues in suffering
and bingo. First Father Delgado, 
legless, sacred air filling the space 
where flesh should be,

but there he is, in his wheelchair, 
grinning, buying cards in the gift shop,
or stretching his torso Heavenward 
on the chinning bar at PT. He’s amazing
And  there’s Dottie--so teensy she slips

from chairs, but guess what? She wears a size 10
shoe and birthed 10 pound boys, up there
on the mountain where she was a nurse.
And then so many get disappeared, it seems,
slumped and snacking during movie time one day

then I’m watching them carried out of here
the next, good and dead. You get used to it.
When we quarantined in March,
nursing home staff cuts 
left hers a ghost town.

I can’t remember the last time I had dry pants,
my mother laughs, still up for stoic schtick.     
But they call me Sunshine here,
you know, others always complaining, 
but not me--not I. 

Still, she thrills at the finches
darting, bickering, 
picking at berries and, 
she concedes, probably,
you know, mating.    

The night before she dies
she’s rhapsodic on the phone 
about a beach day years back, 
poking along the shore line, 
our steps scattering plovers.    

When I wake, my mother appears,
head bent low over her walker,
large breasts like pendulums pulling her
earthward, her body’s gas and dust  
rising as blinding sunlight.

Not in This House

By Helen Mirkil

You forged ahead,
up Big Creek, Clark Fork,
Kootenai. You earned
the name Montana.

Told me campfire stories
up the Bitterroot,
black backpack, dusty boots,
wide shoulders, black straw hat.

Through mountain streams
we bathed in freckled light,
the cloudless blue,
the scent of evergreen.

Today your hands negotiate
the kitchen, gripping
as if it were Mt. Sentinel
with outcrops, each leg

hauls a ton. To live here
in this house, small rooms,
uncarpeted, what if,
at every turn. The only light

is the insistent sound
of dogs and sunrise
scratching at the door.

Crumbs

By Minter Krotzer

I am watching the dog who is watching Hal,
waiting for his crumbs, ready to make
the move to the place underneath his chair.
She is patient, her body alert and poised.

Alas, when Hal stands more crumbs fall 
from his place mat, the edge of the table and his beard.
A shower of breadcrumbs, corn kernels, pieces of fish 
and, if she’s lucky, salmon skin itself.

She makes the move, feasting
on the crumbs, as if they are manna
left in the wilderness, just for her.
(She is never interested in my crumbs.)

I have given up on the idea of having
a crumb-less house, or a husband who wears an adult
bib, or dining cloth protector as they call it. 
(Neither of us wants that.)

I try not to feel like Cinderella, as I sweep up 
the crumbs the dog has missed or plain doesn’t want. 
The table has become one of Hal’s many battlegrounds,
along with the sidewalk, a restaurant, or even our living room.

She follows him out of the room,
as she always does, pausing when he pauses
at the sofa, before taking the next step.
She stares up at him, ready to go.

Away

By Minter Krotzer

Sometimes I just want to walk out the front door and never come back, just keep walking down the street as if I’m going to the store or the bus stop, as if everything is okay. No one would think anything of it. I wouldn’t be carrying a bag or a purse, not even a coat. I would just be walking, walking somewhere away, away from the house and the car, the husband and the dog, away from making dinner or straightening up, away from all the lists – the morning to do list, the grocery list, the still to do list and the end of day gratitude list that someone said I should do. 

I take step after step, walking down the street, wondering if anyone would notice that I am gone, that dinner is not on the table, the dog isn’t fed, the front porch light hasn’t been turned on and the garbage and recycling cans aren’t out.

Sometimes when I walk, I imagine that I am already away, a far-off place or another country even, and that I am walking down a sidewalk in Rome or a pebbled path on the Isle of Skye. I squint my eyes a bit when I do this so that I can pretend better, so that a shrub can become a moss-covered rock in Wales or the sunset a mountain range in the distance. I can smell someone else’s dinner being cooked and imagine that someone is making dinner for me, preparing a special meal of shrimp and cut up tomatoes, a baguette and a salad. I imagine walking into one of these other houses, into someone else’s life, and leaving mine behind.

Like A Clock That's Wound Too Tight

By Bill Tope

I feel like a clock that's been
Wound too tight, and by clumsy
Hands that shake and tremble.
When I run down I take in
Everything out of sequence,
Living through events that in
Reality happen much slower
Than I experience them.

I'll watch a television program
For an hour, only to discover
That it's been on for only ten
Minutes.  Or at night 
I'll type up a new poem,
Working well into the morning,
Then I'll find out that it's just
9:30 pm and I've been at my
Keyboard for only twenty 
Minutes or so.

Having Parkinson's Disease
Is like living on the ocean 
Floor: all your movements are
Deliberate but sluggish, one
Hesitant step after another.
Parking lots are negotiable,
So long as they're not loose
Gravel, but wet, grassy slopes
Are out of the question.

Roads are tough, too.  Drivers
All seem to be driving100 mph
Until they see you at the side of
The highway; then they bait you,
Dare you to cross against the
Traffic.  And the roads themselves
All seem to be 500 feet across.
When you just can't make your
Legs break into even a feeble
Run, you sometimes find yourself 
Very vulnerable.

And other distances pose a problem
As well.  Where in my youth
I often walked ten miles in a
Single day, nowadays two blocks 
Is about as far as I can travel
and that only with several 
Breaks in order to rest my
Arthritic joints.

Walking through my house,
Avoiding walls and the furniture
And my cat, is always an
Adventure.  I have Tourette's, 
So I am not retiring but rather 
Impulsive.  I speak to people
I meet on the streets,
Endeavoring to be friendly.

But sometimes I say odd
Things.  People willl then
Cringe or steal away, not
Certain what to make of the
Old man who is traipsing so
Awkwardly down the street,
Almost certain to fall on his
Face.  I shrug and move on.
Fenced dogs bark at me.

Of course I can no longer
Drive, but bop about town on
The transit buses, going just
About everywhere.  I have
Reluctantly become a town
Character, the old man who
Trembles and slips and falls
And who utters non sequitors
Out of nowhere.

The merchants don't mind,
So long as I behave myself and
Don't try to panhandle.  By
Putting up with me they show
How tolerant they can be,
Which in turn is good for
Business.  Besides, my money
Is as green as anybody's.

The police are something else
Entirely.  Once a young cop
Stopped me and demanded to
Know what I was up to.  A 
Customer from a store I had
Just quitted had phoned the
Police to report a "suspicious
Character" who acted as though
He were high.  (If only!)

This cop asked very intrusive
And presumptuous questions
And had me walk a straight
Line, touch the tip of my nose
With my finger, the whole nine
Yards  The standard sobriety
Test.  Though I hadn't smoked,
Drunk, popped or injected
Anything, I almost felt like
Confessing.

At length he only reluctantly 
Allowed me to proceed on my 
Way, reminding me several times
That he had "seen and heard 
And knew everything."  I wanted 
To ask him if he knew when he
Would start shaving.

My mind frankly doesn't function
As it once did:  I'm slower on the
Uptake, might not immediately
Get a joke or understand what's
Being said.  My hearing is bad, too.
And I hear and see things that 
Aren't really there.    

Sometimes late at night
There is a roaring sound in 
My ears, like the clanking and 
Clattering of Heavy machinery.  
Or I'll be reading and suddenly a 
Bright green bird will fly across 
My bedroom.  That's probably only 
A hallucination, but who knows?

But things aren't all bad.
I have a warm house to live
In, thanks to my wonderful
Parents, a meager but 
Dependable stream of income 
From the government to see 
Me through. 

And I can type!  For the past ten
Years I couldn't type a word, but
Thanks to the power of prayer--
Really!--I can type again, albeit 
Badly and slowly.   And the 
Women?  They love me: "C'mon, 
Babe, we'll do the town and spend
This fat disability check!"
They really dig it.  As rocker Joe
Walsh once said, "I can't complain, 
But sometimes I still do..."

Water Striders

By Holly Thompson

you are on the dock before me
before the sun, impatient
not waiting, shuffling toward
the rowing-rigged canoe
lifting the stern to launch
and nearly launching yourself

I steady the boat
steady your body
ease you in
strap your feet
shove you off
watch you set the oars
and take your first longed-for pull

behind you I slip into the kayak
paddle to reach you—already
halfway to the small islands
and together stroking the water
skimming over the lake’s skin
slicing and gliding the stillness
we know this won’t last

the sun will crest the trees
motors will sound
voices will carry
the wind will churn the surface
your strength will fail
and your senses, too
cast to lake floor depths
like stones dropping down
to mussels poking through sand
and leaves caught in crevices
of cool granite shelves

so we pull
against the water
push against the water
skim over the water
taking this lake
one more morning

Portrait & Shadow

By Andrés Cerpa

The curtains sail into the room with the memory of presence behind them

while my father waits in the dark taking apart what is left of his former selves,
         like a pianist, drunk at the keys, playing the same four notes,

 letting them ring in the pedals until they haul themselves back into sleep.

 He says, I am shadow

 & the thief at the seam of his spine slides through the blades of his shoulders,
         hollows the blood, while the dopamine cheapens

 like a dollar-store lighter & suddenly, another streak in his Depends emerges as proof.

 This too in Arcadia –

 the meadow in twilight’s last streak of red before he enters the tree line,

 which is already waiting, its small footpaths like paintings held in storage,
         their deep palettes so close they strangle to a labyrinth

 laced in an MRI-black. The wolf there tears at his tendons,

 leaves him always in fog, & if he emerges it is only to watch but not to enter
         the burning city & self he still loves.

 He says, I am the smoke’s mascara

 & I know he is imagining the Bronx he can never return to,
         where his youth is held in the thin frame of a bicycle

 as it cuts through a billow of smoke. The city burned each night & each morning
         he rose to ride through the rubble. The what was,

the father I hold onto in order to care for his shadow never gets old –  

he is kind & clear, he rises each morning & lifts me onto the back of his bicycle,
he pedals while I glide above the city in wonder.

Poems previously published in the collection Bicycle in a Ransacked City: An Elegy (2019) from Alice James Books. Permission to republish is granted from the press and the author.

Notebook: The Kairos in Chronos

By Andrés Cerpa

At the Guggenheim, on Sunday, early, my father & I are walking,

         entering rooms as he begins to slow & fog. 

 The Parkinson’s like birth & death in each season. Each season in a day. He cracks jokes,

        stares, & I hold his shoulder,

 consciously trying to touch, reaffirm, & comfort.

        This is what passes for happiness. Is happiness now.

 Well, we walk & keep walking.

         I think, Wind does not preclude light.

 But now that I’m twenty-six, which sounds foolish, I know, dear reader,

         I am learning, unlearning,

 as Picasso’s Woman Ironing, in that blue after, put all her skeletal weight

         into neating just one thing.

 I miss you already was the song of my youth.

         It was a slow, good morning here,

 here in this world, my one life, next to my father’s.

Fear of Intimacy

By Andrés Cerpa

When my father tried to kill himself the first time, he ripped a telephone wire
from the wall of his hospital bedroom. 

 The next time it was a bedsheet. A nurse stopped him.

In his pockets were pencil notes: confessions for crimes he did not commit but felt
must have been the crimes of his punishment.

As the days continued the list grew like keloid scars from the DBS.

When I’d visit, he’d ask, Was it in the papers? When I’d leave he’d say, Don’t come back.

His mind: the same sentences like a vinyl’s skip the way they widened,
trailed & returned.

As he kissed my mother in the ward’s cafeteria he whispered, I am Judas.

When my father’s mind became the small wheel in my chest, I didn’t want to love anyone I didn’t already love & those I loved I hid from.

I broke up with my girlfriend. Smoked outside Beth Israel & took the long way home.

At the end of each avenue, everyone who was left I watched as if they were
on the horizon & could break

at any moment. Then what?

I’d have to wade in, find the fragments & clear my already empty studio,
wake to the shadow of something half-finished & continue –

the currency of love is self-sacrifice.

Avoiding Rigidity

By Hal Sirowitz

“It’s the medicine that makes me shake,
not the disease,” I said. “Then why
take it?” she said. “If I stopped, I
wouldn’t be able to walk,” I said.
“My body would become rigid.”
“Rigidity seems better than
all that shaking you do,”
she said. “I’d rather shake
than not be able to move,”
I said. “Each to his own.”
she said. “But if you were rigid,
I wouldn’t have to worry
about you accidentally
hitting me on the head. But if I
couldn’t move,” I said, “what
would we do to make time pass?”
“We’d do nothing,” she said. “We do that, anyway.”

Previously published in Beauty is a Verb: The New Poetry of Disability

The Bother of Positive Thinking

By Hal Sirowitz

With my luck I happened to sit next
to a female version of Norman Vincent Peale
on a crowded subway train. “What disease
do you have?” she asked. “You’re shaking
so much it’s hard for me to read my newspaper.”
“Parkinson’s,” I said. “You’ve got it wrong,”
she said. “You should be trembling, not
shaking. I’m a doctor, so I should know.
Repeat after me. I will not shake. Only
My fingers will tremble, not my arms.
If you’re unfortunate enough to have
a chronic disease, show the proper
symptoms. Don’t make up unrelated
ones.” I got off the next stop,
and got on another car. It might have been
more crowded, but at least she wasn’t on it.

Previously published in Hanging Loose 106

Parsons Cider Mill, Worcester, MA

By Susan Brennan

for Ken Moynihan, historian

You took us to a brook
we watched it squirrel around ice
cutting innovative shapes.

The cider mill, centuries old, would still be crushing apples
you explained, exactly the way they used to
if it hadn’t burnt down two decades ago.

You took my father on this same trail a few years before his death
walked me in his footsteps
gave me memory of what he adored:

overblown silver maples and their boney roots,
the town’s genius for assembly,
the felters mill, the rug factory, the loom works

a dam made solely to pond water for mill power.
Over that clever river we crossed
an undeniably solid bridge.

We walked slow through the falling snow.
You insisted on going the whole route even though
your boots drew long skid marks

your right-hand twitching in a rhythm
unsyncopated to your words, mild and certain
as you stood in the past ferrying back

to us each precise narrative; 
those who labored round the clock within these buildings
the bones of which are still hoisted and somehow hopeful.

Did those ghosts fantasize that there would be an us 
lost in their future
to remember them
while they lifted crates of apples, cleaned blades and made mash of cores?

Are we all somehow timestamped?
How could we have imagined that a just few years later
you would die the same date my father died.

I want to remember this: at some point inside the ruin, we pass
a stone wall standing alone, an iron window frame miraculously 
grips a stack of tightly packed rocks

the air hardens our voices
as we call through the window in false joking hellos –
I thought you looked past my eyes

to someone else alongside me –
coveralls and blistered palms?
or did you see my father there waiting and waving a glass of cider?

Backstory

By Kevin Hinkle

I wake with a grunt and kick the sheet
off violent dreams—knuckles pressing skin,
arms swinging but missing. The urge to fight
grows at night and flows quickly away
when the sun separates the blinds.
I realize that it’s not really my dreams
that have called for the clench. My brain’s

attempting to embody my enemies,
give them throats I can grab, windpipes
I can crush, arteries I can pierce. It’s trying
to make me believe I have some control,
can claim victory through violence.
This brain that attacks during the day
can’t ingratiate itself at night.

Beyond Words

By Minter Krotzer

My husband is talking but I can’t understand a word he is saying. His voice sounds muffled and blurred, like he is speaking under water. The words are monotonous, indistinguishable but I grasp for them, trying hard to find one word, just one word, that I can understand, hoping it will give me a clue to the rest. 

Hal thinks he is speaking fine, that he can be understood. It’s one of the curses of Parkinson’s – that he doesn’t know when he is speaking low or undecipherably, or that he is taking small steps instead of big ones or writing the tiniest letters you have ever seen, micrographia they call it, instead of his good school-boy cursive.

I ask him to repeat what he’s said once, twice, three times and I guess at what the words are and repeat them back to him – swimming pool? drool? blue drool?  I throw humor in because this is the part when one or both of us starts to lose patience. I get tired of asking him to repeat and he gets tired of repeating. Sometimes that’s when we give up. I imagine his unrecognized sentences out there, floating around, ununderstood, spoken but not conveyed. 

But he keeps talking this time and I listen for what I hear beyond words, to the way he is saying what he is saying, to the gentleness in his voice and its warmth. I see his eyes light up at sharing his thoughts with me. I find myself listening, no longer caring about words. I see, finally see, that he is speaking to me beyond words.

Alone

By Brian Peterson

You know you need more dopamine when: you’re glad to be using a walking stick because it means you’re still walking.

I barely notice the tapping any more—the steady thwip, thwap of rubber tip on floor as I navigate my way through the house. Except when I’m in our kitchen, where the sound reverberates up from the linoleum and echoes briefly over the table before dissipating in midair, bouncing back and forth between engagements, marriages, grandchildren, vacations, ancestors, births. Not just photographs. Things: like the miniature ceramic house I bought when we made our final mortgage payment.

My favorite is the large black-and-white photograph in a wood frame: smiling couple in windbreakers, standing next to each other on a bare rock, lake stretched out behind them, hair blowing wildly. I had ten seconds to get from camera to rock, pull her close, smile. The rock was steep, a bit slippery, but just a quick jump and a few big steps and I was by her side with my arm around her shoulder. Too far away to hear the click, but I could see the shutter open and close. Glad to have that picture. Not doing much rock climbing these days.

You know you need more dopamine when: not having brain surgery (too risky) is more terrifying than being awake while somebody drills holes in your skull.

Thwip, thwap. In most places nobody hears the tapping because they’re too busy gabbing, squeezing tomatoes, playing with their phones. But in restaurants, airports, lobbies—anywhere people have nothing to do but sit and wait—the calipers come out. Heads turn, brows furrow, eyes discretely glance in the direction of this old guy with the blazing white beard and ponytail, paunchy but solidly built, baseball cap and black walking stick with rubber grip, who moves so carefully among chair legs and onrushing waiters, stopping and starting, as if he’s in an obstacle course instead of a diner.

It must go back to some instinctive need to size people up—friend or foe, fight or flight, that sort of thing. Maybe there’s a gene for it, because nearly everybody plays this game—I do too. I call it Name That Disorder. You see someone who has a problem, some odd behavior, a set of physical symptoms, and your brain starts to drill down a taxonomic checklist, sorting through whatever scant knowledge you have about this or that, finally arriving at: (A) drunk; (B) mentally challenged; (C) knee surgery; (D) progressive neurological disorder that destroys dopaminergic neurons; (E) all of the above.

The problem is, even highly trained neuron docs don’t have a surefire way of diagnosing Parkinson’s disease, and sometimes people suffer for years before someone figures it out. Those docs are pretty smart though. They told me early on that I have a subspecies that responds well to the drugs but progresses more quickly. I decided, however, that they were wrong. This wouldn’t apply, you know, to me. I didn’t realize I’d made this decision. I was just being the stubborn and delusional person I’m wired to be.

Several years and a couple doctors later, sitting on an examining table, I heard the words, “In a year or two you will need a cane or a walker, and a wheelchair’s not far behind.” I looked at my high-powered neurologist like he was saying palm trees grow at the North Pole.

I said, “If an act of will can hold this thing back, I’m your guy.” He looked down at the floor, said nothing. The thing is, I am the perfect patient. A doctor told me that. For nine years I’d downed the right pills, seen the right doctors, read the right books. I knew more about Parkinson’s disease than an average physician. Doctors asked me questions about how it’s managed. Okay, that happened once. But still, it happened.

I’d bicepped and tricepped, gluted and hamstringed, pushed, pulled, squatted, stretched. Exercise, yes. But I’d hired personal trainers, twice a week, three times a week, costing me more dough per month than a mortgage. I mean, these drill sergeants practically killed me some days. I told them to jack it up.

Thanks to the exercise, my suit jackets no longer fit me—had to buy new ones, a size or two larger. I was proud of it. People who hadn’t seen me in a while would inevitably begin a conversation with “You look great!” I’d never cared about my body before. Not really. I was a brain guy, not a body guy.

Drugs. Exercise. Then there were the video games. Not the shoot-’em-up, destroy-all-zombies kind.  I have a movement disorder—so I practiced moving. I bought every system, every game that forced my legs and arms to work.

I did everything a human being could possibly do to beat back the wolves short of snake oil and green smoothies with magical healing powers.

But the wolves have nothing to prove. They take all the time they need. Wolves—no, that doesn’t quite describe it; more like an army of invisible worms with teeth, burrowing into soft, captive flesh, savoring every bite.

Friends tease me about the lengthy row of video game boxes below my TV. These friends don’t understand. I tell people I see a personal trainer twice a week, and if I say “she,” they reply, “Oh really, a personal trainer, eh? Nudge nudge, wink wink.” These people haven’t a clue.

It’s hard, even, for my wife sometimes, the mate of my soul, who cares for me in ways too personal to share. And I can see it—the trainer and I interact physically, we talk, we share things, a bond forms, one thing leads to another—what wife wouldn’t worry, just a little, about her husband in that situation? I can see it. Even she, who knows me better than anyone, who has observed me at my best and my worst, who would do anything to make my body behave—sometimes, once in a while, even she misses the point.

 I’m fighting for my life. You got that, people? My life. The wolves, the flesh-eating worms, the dopamine riff—those aren’t just clever words on a page. Every breath, every heartbeat, every nanosecond that we have here—it’s worth fighting for.

Now, as I tap my way around the house, and glance at the exercise equipment and the video game boxes, I see desperation. Desperate to finish what I started, and desperate to control what can’t be controlled.

I take pride in self-knowledge—consider it the highest human achievement. Often it comes by living your illusions until reality reaches out and kicks you where it hurts.

I felt that kick when my legs stopped moving in the middle of a coffee shop one dark February night and I couldn’t get them to start up again. The legs just wouldn’t move. Another kick happened in an airport, when I got so frustrated with my body’s refusal to cooperate that I gave in to my rage and decided to walk to the gate instead of riding the stupid golf cart, only to freeze up and break down in a crowded hallway while Helen looked on in helpless horror.

And finally, full force, without warning, in the middle of the night, in our small winter apartment, when I couldn’t avoid the truth anymore, with my wife holding me in her arms, and all the years of fighting and learning and stubbornly refusing to admit that this disease would have its way with me, it all came out in a rush and I broke down and wept like a motherless and fatherless child.

 You know you need more dopamine when: the first thing you think about in a restaurant is how far your table will be from the toilet.

A few days after the airport “meltdown,” I met an old friend for lunch. Sure enough, he’d arrived first and placed us at the most mathematically distant location possible from the bathroom. “Not letting a few lousy neurons ruin MY life,” I muttered to myself as I tapped my way in his direction, lurching forward here and there, grabbing the back of a stranger’s chair to prevent disaster, and every head in the room turned in my direction.

I think I’ll have somebody make a portable LCD sign that I can wear on my back and turn on when necessary. parkinson’s disease, the sign will say, followed by resume your lives now.

Halfway through lunch, the bladder spoke. I excused myself. My friend looked at me and said, “Will you be okay? Need some help?”

“Nope,” I said, “Just get comfortable.”

Turned out that half the restaurant was unoccupied. What a relief! No waitresses suddenly crossing my path, no complex interplay of flashing lights and noise. Nothing to mess up what my doc calls “the Parkinsonian brain.”

But the section wasn’t empty. At the last table before the men’s room, I passed a lady sitting quietly by herself, reading, drinking coffee. She glanced up, saw the walking stick, studied my face briefly, and said, “Sometimes my toes really bother me and it’s hard to walk.”

I nodded but said nothing, too busy concentrating on the next challenge, the bathroom door. The Parkinsonian brain has trouble with doorways, barriers, transitions. Revolving doors—kiss of death. The experts don’t know why—something goes haywire as the brain processes sensory input. The legs sort of explode beneath me, like a blast of electricity has turned them into slow-motion jackhammers; meanwhile, the rest of me keeps right on going, and suddenly my whole body is pitching forward like it’s marching down a steep hill.

I managed the bathroom door, took care of necessities. Tapping my way back, I passed the nice lady again. She had been kind enough to start a conversation, so to be polite I said, “I guess you don’t appreciate what you have until you lose it.” She turned toward me, closed her book. “I had cancer, and it was a close call.” I nodded, looked down at my feet. “Parkinson’s.”

She smiled, a grim smile, friendly, but hard-edged. The smile of a wounded soldier who’d briefly found a comrade-in-arms, someone who would listen to what she had to say, so she would not be wasting her words.

“You have friends,” she said. “You have people who care about you, who love you. But you have to face it alone.”

I nodded. So true, I thought, as I inched forward, walking stick thwapping on the hardwood floor. So true. Each of us a solitary soul, trying to find our way, seeking guidance and friendship. But no one can do the seeking for us. Sometimes people try, but the ones who shout the loudest are the most afraid to face what the restaurant lady had faced: the betrayal of her body, the uncertainty, and the essential aloneness of every conscious soul. But from that solitude, we reach out, discover that we’re not alone. We connect. We form communities—like me and the restaurant lady. Solitary comrades.

My solitude meets yours. Somewhere there, in the middle, in the air between us, a door opens and a breath, a zephyr of love flows through. Invisible, fleeting, but is there anything more real? Anything more, somehow, permanent?

I greeted her smile with mine, tipped my head in her direction as she lowered her gaze and opened her book again. I turned back toward my friend. Thwip, thwap, thwip-thwap. Alone. Yes. But never alone. Yes. Thwap, thwip. Always . . . never . . . alone.

Lydia

By Sarah Beth Childers

My dad’s Parkinson’s disease seems to date from my twenty-two-year-old brother’s suicide in 2012. Joshua was my parents’ youngest child. The last infant to coat himself in a burst bag of flour. The last toddler to press wispy blond curls against my dad’s shoulder for a nap. The last teen to speechify in the living room about how no one understood him. The last to shake the principal’s hand in his cap and gown.

         After my dad’s diagnosis in his early 60s, five years after Joshua’s suicide, my family realized my dad had shown early symptoms for twenty years: tiny handwriting, episodes of punching and screaming while he lay asleep next to my mother, constipation, rounded shoulders, lengthy pauses within sentences when he told a story. So, maybe the onset of symptoms was gradual. But I do know this: while I was lost in my own grief over Joshua’s death, my heartbroken dad transformed. Before Joshua died, my dad could lift an aluminum canoe onto a minivan’s roof rack, outpace his four adult children on a trail through the Appalachian foothills. After, a whole restaurant table rattled when my dad grabbed it to steady himself, and walking was a fight.

*

Sometime in early fall, 2015, I was out driving in the sun-gold Oklahoma prairies. I’d recently moved a thousand miles from the house where I grew up and my brother died, from my father’s intensifying weakness, trying to leave some of my sadness in West Virginia. I turned on the radio and heard a woman talking about her husband’s experience with Parkinson’s disease. Now, six years after I heard that radio program, I remember only blue sky and prairie through car windows and this one detail: the woman said her husband’s symptoms disappeared entirely for two full years after his first grandchild was born.

         The day I turned on the car radio, I strongly suspected my dad had Parkinson’s—and I believe he suspected it himself—but he wasn’t ready to go to the doctor yet. Research had taught me that a quicker beginning of treatment couldn’t stop the disease’s progression, but only control the symptoms, so I wasn’t pressing him to go to the doctor before he was ready. So, I waited and worried.   

         And, the day I turned on the radio, I was terrified to have children. I’d dreamed of becoming a mom since childhood, imagining camping trips with little ones in fabulous tents, compiling lists of hideously archaic potential names in my high school notebooks. But I’d given up those dreams when my mother found my brother’s cold body in the bedroom next the one where she and my dad slept. If I had children, they might face the same mental health struggles that led to Joshua’s death. I might have to live on after my children died.

         But then I drove through the prairies on a sunny day, listening to a woman talk about the effects of happiness on a person with Parkinson’s disease. She linked Parkinson’s and children—topics I’d been associating with the worst sort of despair—firmly with joy. 

         As I listened, I became certain of two things. Two things I couldn’t truly know, but I turned out to be right. One: my dad had Parkinson’s disease, but he had good years ahead of him. Two: I was going to give him his first grandchild.

*

I moved to the Oklahoma prairies sad and alone. Less than a month after I heard that radio program, I met the man I would marry. In 2018, my dad shuffled me down the aisle in a castle in Scotland, and, less than a year later, I found out I was pregnant.

I tested at three weeks, frighteningly early since most miscarriages happen between weeks three and five, and I was thirty-seven years old. But my husband and I had been trying, and I wanted to know. I went ahead and called my family. If heartbreak was coming, they’d handled worse before, and they needed happiness. My dad had lost his job as a pharmaceutical formulation chemist in a plant shutdown the year before, and new job prospects seemed to disappear the moment that hiring committees met him in person, and often, when they heard his quiet, halting voice on the phone. Right after the layoff, my dad’s health and strength had improved—more time for self-care and exercise—but I could tell depression was setting in. He looked stiffer, and moved more slowly, every time I visited West Virginia. He appeared to be zooming through the Parkinson’s stages. I wasn’t sure how many years he’d want to fight to live well, or to even to stay alive.

On the phone with my parents, clutching my pee-dipped stick, I said only, “I got a positive result on a pregnancy test.” I wouldn’t be ready for weeks to say, “I’m pregnant.” But my parents hoped for me. My mom wrote me an email right after the phone call. She said, “I teared up after you got off the phone. However, your daddy just bawled.”

*

Lydia was born in April 2020, so my parents couldn’t travel. In May, my husband and I drove the thousand miles during our two-month-old’s naps, waiting out her waking times in city parks with padlocked-shut restrooms. My parents and my sister who lived nearby watched from the window and met us in the driveway. My mom took Lydia and introduced her to every photo in the house: Lydia’s dead’s great-grandparents, her Uncle Joshua.

My dad didn’t want to hold Lydia at first, fearing he was too unsteady. He watched as my mom held her, and he served as my mom’s assistant when I took a break from baby care, warming breastmilk with a chemist’s precision. But by the last morning of our visit, my dad sat on the couch while Lydia slept on his shoulder, just like baby Joshua in so many of my memories. When I finished packing the car, my dad said, his eyes smiling, “You can’t have her.”

After I took her, weeping, and traveled a couple of miles west, my sister called me. She said, “Daddy says he’s going to live to see Lydia graduate from high school.” I decided to believe that by live, he meant good years. He would sit in the backyard as Lydia ran in circles, whooping and singing. He’d teach her to identify cardinals, bluebirds, chickadees, and robins. I felt certain he was right.

*

Now, Lydia’s almost one year old, and my parents are planning a move to Oklahoma. Like me, they need to get far away from the place of Joshua’s suicide. And they want to help with Lydia’s care. They want to vacuum her burst bags of flour, to listen to her teenage whining.

Four months ago, my husband and I took Lydia to see my parents at Christmas. My dad watched her crawl around her playpen. He held her on his lap while she studied her new rattle. When we got back to Oklahoma, I sent my parents some photos of Lydia and my dad.

My mom said, “David looks so young and healthy in those pictures!” He did. My mom could see the young, strong man who held baby Joshua. A man with beautiful years left in his life.

My Parkinson's Story

By Hal Sirowitz

I never thought my brain would be an object of study. But there I was in the operating room during my Deep Brain Stimulation Operation, and the doctor was showing it off. There was even a visiting doctor from Iran. My brain was on display for all to see, for everyone except me - I was stationed at the wrong angle and there weren't mirrors in the room that gave me a view. I just had to imagine the medical students studying it. It was a fairly used brain, at least if reading is considered a way to exercise it. Quite frankly, it met my needs. It enabled me to do my job as a special education teacher for the New York City public schools. I had no complaints until Parkinson's entered the picture.

 Suddenly, my brain was on a different path than me. I tried to rein it in, giving it occasional pep talks. "Now listen, brain," I'd say. "I know you owe me no allegiance - for most of my life I thought of you as invisible. But now, you get in my way. Do what you need to do. Don't make every step I take a monumental struggle. Don't make me remind you that you have to release my body to turn over at night when I'm trying to sleep. You're supposed to be my captain - your job is to take care of steering me through tight passages and guiding me towards shelter when it storms. Act like a commander. Don't leave me adrift in the world."

My Parkinson's was a thief that robbed me of my symmetry. It's not that I couldn't dance, but I kept tripping over my feet when I tried. My shoes felt weighted. I could no longer lift my feet without scraping them on the ground. I could no longer be a make-believe spy trailing a foreign agent. I made too much noise when I walked, announcing to the world that I didn't move like a normal person - whatever normal means, I just know it's not me anymore.

 I've long ago given up my Fred Astaire fantasies of gliding on the dance floor with a woman in my arms. But is it asking too much just to be able to walk from point A to point B without the risk of falling? I have to - consciously and with great effort - choreograph my steps. Otherwise, they're just half steps, taking me halfway to where I want to go. Halfway is better than nothing, but it's still not the destination. It's like my feet only take short steps because they're afraid of falling. I find myself addressing my feet: "Get with the program. You have a job to do. You're walking like an old man, which would be okay if I were old. But I don't feel old. So liven up. Walk like getting there is important."

I've also given pep talks to my arms: "I'm not telling you that I expect you to get excited when I walk. But I expect you to move in rotation a little. Don't act like it's the first time you ever met my torso. Get wise. You're stuck with me. You're always going to be at my side. So act like it. Show me a little movement."

I had taken motion for granted. Little did I realize how important it was. Nowadays, I keep catching myself envying how easy it is for someone else to move. When I see a person trudging along with a cane, our eyes meet to salute the past and acknowledge how easy it used to be to walk. Once in a while, someone without a cane will hand me a compliment about how brave I must be to take on the street. However, to this day, I'm afraid to enter a crowded store in fear I might forget and balance myself by leaning on a stranger. (People make excellent poles. They're softer and much more angular.)

Previously published in Beauty is a Verb: The New Poetry of Disability

The Crossing Guard

By Sara Houghteling

(Previously published in Narrative)

I was not home, earlier this spring, when the suicides happened.  I had neither followed the news in the local papers, nor known about the subsequent municipal answer to the town’s existential crisis—a council vote to fund a twenty-four hour watch at the railroad crossing.  It’s only now, upon my return here, in retreat from a string of difficulties in graduate school, that I see the help wanted notice by the site of the deaths. Track guards needed for nightshift at grade crossings.  Beech and Main, Willow and Main, and so on, four familiar intersections, each a block or so from a school, each with a three-way pedestrian crosswalk, where the railway track shares the urban space with the three-lane road that runs north-south through our town like its spine and separates the football stadium and its vestigial organ, the university, from the residential neighborhoods.  I tear one of the fluttering numbers from the sign, return home, and place the call. 

The flyer strikes me as nothing short of providential.  Since I can no longer afford a caregiver for my father, working evenings on the tracks will allow me to spend days with him and to remain close by at night.  Yes, the pay is low.  And no, it will do nothing for my resume, which reads of a life scratching at the gates of academia.  But I’ve been telling myself both the move home and the job will be temporary, stop-gap measures until I have the presence of mind to figure out something else.  Of course, I mention none of this during my interview and I’m hired a few days after. 

A rainy weekend passes, and soon I’m back at the tracks, as instructed, for “training,” “at the office,” which turns out to be two beach chairs with mesh cup holders perched atop a concrete slab near the grade crossing for the train.  There’s a flashing gate arm that rises and lowers, signal lights on brackets, and since the suicides, they’ve added blaring horns as a deterrent.  Ninety-five to 115 decibels.  My job is not to stop the trains, says my boss, Ibrahim. The five-car express to Chicago has a top speed of 79 miles per hour and takes a quarter mile to come to a standstill.  The freights, which run at night, need a mile.  My only job is to call the police.

 The profile, he tells me, is teenagers, alone, at night.  He sighs.  “Besides that, your job is easy. No drugs, no alcohol, no phone.” He stops and frowns. “You going to be okay out here?” 

I swallow.  “Of course.”

“I mean, a woman, by herself, in the dark?”

This hasn’t occurred to me, on my list of worries.  “I’m a night person,” I say, strangely touched by his concern—touched, I suppose, because of my secret belief that there should be a vast ocean of worry welling for me, but no one else besides Ibrahim seems to know of it. 

The wind blows the bushes and they scrape against the hurricane fencing and the sign that reads “Help is just a phone call away” beneath a picture of two hands grasping each other.  Just beyond, a truck idles, puffing out diesel.  Ibrahim stands, and I follow.  He asks, “Live far? The drive home was rough at first.”   

         Before answering, I glance up, over Ibrahim’s right shoulder at our house, at its peeling paint, peaked roof, verdigris weathervane, wrap-around porch, and pair of wicker armchairs.  Where, if he has obeyed, my father sits, awaiting my return. 

I’ve said goodbye to Ibrahim, crossed the street, and am home. After yesterday’s showers, cherry blossom petals confetti our flagstone walk and I notice their loveliness and my own fresh sense of purpose.  I’m daunted by my new job, but grateful, since it will allow me the chance to check in on my father at night from time to time.  Because, what are the odds that something bad will happen the moment I step away from the tracks?  And Dad has even followed my instructions and is sleeping peacefully in the rocking chair.  He has an old, dead friend’s book on Rodin open on his chest, as if he were hugging it to him for comfort.  I kiss his bald forehead and he wakes.  Yet only his eyes smile.  He gives a ballerina gesture with his wrist since his fingers haven’t yet gotten the message to point, and I gather this means I’m to join him. 

We take in the evening, the bicycles pedaling past in waves timed by the tides of trains and traffic.  Sports practice must have just let out at my high school alma mater.  Kids whir by in their team uniforms, in blazes of orange and blue, with their helmets dangling from their bikes’ handle bars.  I look at the gash above my father’s temple, still healing from his fall at the adult day care facility—the last straw.  He seems so delicate.  It’s hard to imagine that most of the world still takes not falling for granted. 

         Father crosses his long legs beneath the afghan.  “How—” he starts.  In the patch of sky before us, sparrows swoop and dart.  I wait.

         “How—” he tries again.  His hand rises, falls.

         I try not to interrupt.  I listen for the faint breath that might hint at the words, from which I might lift his train of thought and cradle it forward.  I try to remind myself that being in each other’s presence is more important than any words that are communicated.  I put my hand on his, which is cold and tremoring.  Trains pass.  Their sound shakes a new shower of petals onto the walk. 

         “Your—” he says.

         “How is my new job?”  I offer.  I’ve told him I’m going to work security on the train tracks at night, but I’m not certain how much of this he understands. His face is a mask.  And now, frustration darkens his eyes and gives them a hard glitter.  He deflates a breath, “The words are stuck.” Illogically, I resent him saying this.  If he’s only granted a few coherent words in a day, then he’s just used up four of them. 

Instead, I ask if he’s hungry, and he nods and grasps the wicker chair’s armrests to rise.  Before Parkinson’s, he stood 6’4,” tipped the scales at 220 pounds.  Now he is gaunter each day, and when he stands, as he does now, his head hangs nearer to mine.  He sways, and I thrust my hip against the side of his thigh and weave my arm under both his armpits and we make our way into the house as the porch’s floorboards groan beneath our steps.  Once in the kitchen, I loop an apron over his head, maneuver him to the table, tune the radio past NPR to “Birdsongs of the Midwest,” the evening broadcast of a local eccentric.  We eat last night’s leftovers, the meal a grand gesture--pupusas, two kinds, one with red beans, the other ground beef.  It’s how Father taught me to cook, because it’s how he learned to cook, when he was a Peace Corps volunteer in El Salvador in ’68 and ’69 and any reminder of this time still makes him happy.  Plus it’s easy to chew and easy to swallow.  I scoop the last few bites into his mouth and a moan through pressed lips tells me it’s good. He hums an improvised ditty which is his brain’s way of communicating contentment.  Next, a bowl of chocolate ice cream for each of us, from his favorite place on campus, near the art museum, where he used to work in the conservation department. 

He’s so tired after his nighttime meds, tired from eating, from walking from porch to kitchen, from kitchen to bathroom, that it’s all I can do to keep him awake while I’m brushing his teeth.  I’ve given up on floss, though one of his molars looks ominous.  I dress him in the flannel pajamas mother bought us her last Christmas, so that we all had a matching pair, and tuck him into bed, straitjacket tight, so he won’t roll, or be tempted to roam. 

On his desk, I set out the new baby monitor.  I can tell already it’s going to eat through the AAA batteries. Yet anything is cheaper than a nursing home or an ER visit.  Not that our precarious finances are even the main reason to avoid them.  Dad has made me vow that he’ll never have to set foot in either place.  He’s clear of his wishes: to die in this house, in his own bed.  No tubes, no IVs, no extraordinary measures.  “Not like your poor mother.”  His advance directives, discussed five years ago, when it seemed impossible, at the office of the neurologist, who had said, “Talk about these things while he can.”

I twist the monitor’s dial and a red light illuminates.  Dad’s already asleep.  I turn on my receiver, which bleats with feedback until I walk into the hall.  I keep going--down the stairs, and out of the house, and across the tracks, where I’m careful not to make eye contact with tonight’s guard, who’s doing Sudoku anyhow, in fingerless gloves.  I hold the receiver to my ear.  Even past the grade, I can make out the sound of my father’s breath, his coughs and chortles.  There’s static, and I realize the signal’s crossing with other devices on the similar frequencies.  I hear a baby crying, a radio station with mariachi music, and one side of the telephone call in which a man is berating “Barbara” about her spending on fish, on gifts, on shoes.  Then Dad again.

I return to the porch, to the rocking chair, to examine the clouds, and the bats chasing insects between the telephone wires.  An owl hoots from the boughs of the maple next door.  I pull the afghan over my shoulders and think, not for the first time, of the perversity of disease—how Father needed steady, trustworthy hands for his work, which was everything to him.  How Degas went blind, Beethoven deaf.  Schumann: damaged hands, tinnitus, sanity.  My mother with her gorgeous figure and the tumor in her breast.

Back upstairs again, I’m too alert to sleep.  I take a sleeping pill, and 90 minutes later, something for anxiety, and finally drift off, listening to the train’s music, to its horn’s rhythm, two quarter notes, each followed by a rest, then another half note trumpeting.  Bells ringing with the descent of the gate at the grade.  If I separate out the clattering triplets of wheels to track, the rush of the train going past can sound like the sea.

The telephone fails to wake me at four, and I think I’m dreaming when I hear Father speaking fluidly in Spanish.

“Buenas noches, Isidro. ¿Cómo está Usted?” He sounds delighted.  “¿Cómo está su papá? ¿Cómo está Don Chepe?” I wake, sit, knuckle my eyes, fumble for the light, and piece together the nouns.  Isidro? Isidro. From Father’s Peace Corps years in El Salvador, one of the seven children in my father’s host family.  Son of Don Chepe, the patriarch whom my own father greatly admired and described at different times as devout, strict, illiterate, generous, brave, Don Chepe whom Father credited with standing by his side when a local landowner grew tired of my father’s presence and the book club he had started for the town’s young men.   I’m less amazed, right now, that Isidro is calling than that my father is speaking Spanish and doing so without those long hitches in his voice.  I creep from bed.  I want to listen. 

“Oh no,” my father mourns through the static.  He sighs.  I imagine Don Chepe has died.  Father’s steps stutter toward his work desk.  A drawer opens.  He rummages through the tray of old pens, their metal clips rake against each other, and with a jangling clang the telephone hits the floor and the whole house trembles as my father falls.  I run downstairs and through the bedroom door and find him on the carpet, thank God, with his head just inches from the desk and its glass blotter and the jars of scalpels, dowels, brushes, and files. The telephone cord wound around his wrist.  The receiver honks, out of reach.

From the floor, Father orders me, Llama a Isidro. Ahora mismo.  This, the imperative form.  His face is ghostly white behind the grey black of his beard and his mouth hangs open.  I check his legs and arms for broken bones.  His bare shins are like an old manuscript, blotched with so many dark circles.

He swats my hand away.  “Call.”

“How?” I beg.

He points to the yellow legal pad that he has sacrificed himself to obtain.  He’s scratched something on there, but the numbers look like they’ve been written during an earthquake.  I try “*69” but am only connected to the operator.  I try ten more different number combinations, waking strangers across the country.  My hands won’t stop shaking.  No one who answers is Isidro.

Father’s breathing sounds strained, and I wonder if he’s bruised a rib, or worse.  He’s still on the floor, because I can’t lift him without him doing some of the work himself, so we wait, both of us lying there, until he recovers.  At last, grasping him by the hands, I pull him up and tip him back to the bed, where he pats my face and says fondly, “Strong girl.”  Cheek to pillow, the story comes, in painful snatches, and at first I think my father is delirious—maybe he has an infection somewhere, maybe it’s that tooth.  But I eventually piece together this: Isidro has been caught, at the border.  Now he’s in a detention center, awaiting deportation.  He wants my father to post his bail—$15,000--money that would allow him to be released to fight his case from the outside.  Isidro promises he’ll show up for the hearings.  He promises to pay my father back. 

There are two problems, one big and one small, depending on how you look at it.  Father doesn’t remember or didn’t hear where the detention center is or what it was called. Nor do we have the money.  The house, I now know, has been mortgaged and remortgaged to the hilt, and each month, I pay only the minimum on the credit cards.  And, I suppose, a third problem.  Isidro has always been either “troubled” or “troublesome.”  I can’t make out what Father says because he falls asleep midsentence.

For a long time, I watch him.  The light is still on, and in it, I study the photographs on his work desk, of which there are three.  In the first, my mother is a newlywed, flying past in a spray of snow on the toboggan my father had made for her.  In the second, we are in an orchard.  I’m four or five years old, in corduroy overalls, astride Father’s shoulders, balancing an apple on my head.  The last is of El Salvador.  It’s strange I’ve never realized this before, that of only three personal items in my father’s work room, his inner sanctum if you will, that a picture of his time abroad could hold its place alongside my mother and me.

I pick up the photograph, blow dust from the glass, and examine the scene.  Don Chepe, his wife, and five of their children stand before a slanting, whitewashed doorway.  They are all dressed in white, hair sleek and neatly parted.  I think Isidro is the baby in the picture, in his mother’s arms.  Don Chepe’s raised hand rests on my father’s shoulder.  Father’s the only one in a rumpled shirt, but he’s tall and tanned and strapping and smiling in a satisfied, easy way.  It’s an expression I don’t recognize, even from before the Parkinson’s.  It rankles, too, this sense of a happier version of him that was somehow kept from me, or left behind.  This feeling isn’t new—even as a child, I remember him showing me the photograph, and how emphatically he had said, “Think how hard it is for us parents to keep you children’s faces and clothing clean.  And now look at this. Those kids are spiffier than you and I ever are and they live in a house with a dirt floor.  Cleanest house I’ve ever set foot in.”  I remember being displeased for failing to live up to the standards of Don Chepe’s children, about whom my father spoke so rhapsodically.  I was too young to wonder if he was patronizing, condescending.  I don’t want to think so.   

I try to look into the baby’s Isidro’s face, but the photograph reveals nothing more than a little bundle in silhouette—a nose and forehead and these, slightly blurry, the mother too.  She must have been bouncing and rocking him, to soothe him, to keep him quiet for the photo.  Which turns my thoughts again to my own mother and the fact that none of us can remember this sensation, of being a bundle in our mother’s cradling arms.  I return to bed, but cannot sleep.  When at last I do, I dream that I have called her on a payphone.  We speak until the money runs out, though about what, I can’t recall. 

The next morning, I am woken by Father’s hand on my shoulder, tremoring.  Which terrifies me first because he has climbed our house’s narrow staircase himself and second because I didn’t hear him.  I sit up in bed, heart hammering.  Outside the train rushes by.  

“Isidro has an uncle in Florida,” he says.  “Don Arturo. The yellow dress he sent you.”  It takes me a minute, but I think back twenty plus years and with a prick of sad joy conjure the gift, the dress, that confection of satin and tulle that was too small upon arrival, more Nutcracker Suite or christening costume than anything my practical, thrifty mother ever hung in my closet.  Where had it gone? Then I remember why Father is telling me this.  The question of bail, the lost boy.

Still groggy, I rise, and we unearth Father’s Rolodex.  Some cards are typed, others archaeological evidence of Father’s once beautiful cursive and fondness for antique fountain pens.  We flip past cards of collectors in Grosse Pointe and museums in Houston until at last we arrive at Arturo Flores, an uncle on Isidro’s mother’s side.  How Father was able to remember his surname is another mystery of Parkinson’s.  I dial, and speak to his wife, who gives us the number at the parking garage where her husband works.  Again we dial.  After a dozen rings, Don Arturo answers, and Father insists on speaking, and in Spanish.  Again, he is wondrously fluent and lucid at first—I remember now, the neurologist telling us that it’s sometimes easier for Parkinsonians to speak in a foreign language than in their hardwired mother tongue.  When Father begins to flag, I take over.  Isidro has not called Don Arturo.  It seems he had one phone call, and Father was it.  Don Arturo will ring if he hears any news.

“And look, Miss,” he says as we’re about to hang up.  “He’s going to get deported.  I know your father is a good man, but it would be a waste of his money.  If my nephew called me, I would say, Sorry, I cannot help you.  It will cost ten, fifteen K and it will be for nothing.”   

We are both upset.  I can tell Father is upset because he sleeps more and when he wakes his stomach is unsettled and he spends so long in the bathroom I peek through the keyhole to make sure he hasn’t fallen.  I spend the day calling detention centers and immigration lawyers and immigrants’ rights hotlines and the police in Douglas, Naco, and Nogales, Arizona.  Then I start on Texas, daunting Texas.  California will follow.  I learn that the centers do not accept incoming calls.  I learn that the inmates have to pay for the calls themselves, and that a single phone call can cost weeks of work (for which the inmates are paid a dollar a day).  I learn that there is a detainee locating database, but only if you know the person’s exact DOB and have their full name spelled correctly.  One attorney I call has a payment plan.  Someone else tells me that the number Father scrawled could be Isidro’s detainee ID.  A third suggests that in LA, lawyer’s fees and detainee’s bonds are generally cheaper.  According to visahelp.com, Isidro’s $15,000 bail means he’s considered a flight risk.   

I’m tired and irritable, and so is Father.

“What should we--?” he asks me, from his chair on the porch.  He tries the phrase again, starts and stops.  The owl hoots from the neighbor’s maple.

“We should do the right thing.”

“We can’t.”

Father shifts and the wicker chair creaks.  “The money,” he says.  But I’m thinking about how as a child, on my birthday, we’d take out the machete he’d bought in El Salvador and cut my cake with it.  How the hiking boots he wore all through the Peace Corps still stand scuffed and waiting in the hallway, and how the yellowed, crumbling books from the ill-fated reading group huddle together on the shelf behind the piano.  The Collected Poems of José Martí, and translations of The Stranger and The Old Man and the Sea.  Father seems close to tears. 

“What a waste,” he says.

I’m not sure what he means, and I don’t have time to ask.  Instead I’ve got to hustle him through the bedtime routine so I can go to my first night of work.  His mouth smells like something is rotting in there.  Either it’s that back molar, or his dry mouth--another side effect of his meds, which sometimes seem nearly as bad as the disease itself.

I switch on the baby monitor, tuck my father in, and kiss the smooth cool of his brow.  I tell him where I’m off to.  I can’t tell what he understands, yet he grips my arm tightly and has trouble letting go.  It’s the PD, I know, but it makes our goodbyes more fraught and more tender.  I’m nervous, too, about leaving.  I’m sweating already, and my uniform for the night doesn’t help—I’ve got on a knit hat and some flannel-lined pants and the green work-issued parka, which neither looks nor smells new.  Things crinkle in its pockets—I find an empty blister foil of caffeine pills in one, and in another, a few pieces of Nicorette, and a rosary, which out of superstition I keep.  I add the baby monitor receiver beside it, leave the light on in the hallway, lock the front door, and in forty-five seconds I’m at the tracks, five minutes early for my shift.  I take sign-out from Crescencio who shakes my hand and gives me a donut still in its plastic sleeve, left over from his dinner, and a tattered prayer book he said another guard gave him on his first night on the job.

“Glad they found somebody better than Richie,” he says. Apparently Richie got off his shift and thirty minutes later was arrested for attempted armed robbery at the big house down my street. “Employee retention is a problem,” he adds.

I ask why.

“You’ll see,” he says, shouldering his backpack and taking off on his BMX and dissolving into the dark. 

What I see, at first, is dog walkers, a homeless vet I recognize from the Kroger’s parking lot, a few joggers with their earbuds in. The lawyer who Richie tried to rob, rollerblading.  I’m a little jumpy, I scan everyone for any sudden movement, but these are leisurely folks.  A few people raise a hand in greeting, more than you’d expect wish me a good night, and some even call, “Thanks for being here!” I see various neighbors, none of who recognize me, whether because of the parka, or my years away.  The first train shrieks by.  I pucker my whistle, grasp the CB radio with my right hand and wave to the driver with my left.  He lets his arm dangle from the cab to give me a Hawaiian “hang loose.”  I have a brief rush of love for my fellow man.  Another train passes, and again I wave.  Perhaps the driver doesn’t see me, perhaps he’s not in the habit of waving.  By eleven, it’s cold enough that I don’t want to take my hands out of my pockets unless I have to.  The last dogwalkers have long faded into the leafy archway of my street and I find myself alone, with the rhythmic rumble and roar of the trains and the occasional scratch of static from the baby monitor.   

Midnight.  Ten trains have passed.  A stray dog ambles along the tracks.  I lure it away with a piece of the donut.  On the receiver, Father’s snores intercut with the chatter of some train enthusiasts.  “Foamers,” they call themselves.  For foaming at the mouth, over trains.  I gather that there’s no freight at this hour worth watching, but they’re still talking to each other.  I think about Isidro, that blurry baby in the photograph, and what his passage across the border must have been like, and now, the hours he’s spent in a cell or crowded detention center wondering what my father will do. 

One a.m., legs numb.  Five more trains.  By two, I am nodding off, cursing the previous night’s interrupted sleep.  A gigantic freight churns past in a swirl of diesel fumes.  Its horn sounds like a jazz trumpet’s wah wah—there’s art in his horn blasts, a kind of deafening sonic semaphore I can’t interpret.  My thoughts return again to Isidro and the shameful little I know about El Salvador.  Watching Romero with my father as he wept.  The earthquakes.  The fourteen families. That Don Chepe had taken Father to Acajutla, and Father had told me about the Indians’ stand against the Spaniards there.  But I haven’t been able to read or listen to the news since I came home from grad school and I couldn’t name the Salvadoran president if I tried.  My father would be ashamed.  What a waste.  

By three, the darkness begins to pulse in patches just beyond my peripheral vision.  At four, a teenager wearing a track jacket in my high school’s orange and blue saunters by.  He’s got his music on loud enough for me to hear the thrashing guitars and drums through his headphones.  He shakes a cigarette from its pack and, sensing my gaze, offers one to me. 

I decline, after a beat, then fish in my pocket for the Nicorette and proffer it instead.  He laughs, too loudly, though probably because of the music. “Good stuff,” he shouts, “You should try it.”

The lights on the brackets start to flash, and the 4:44 hurtles towards us. The kid gives me a sidelong glance and bounces on his toes.  In a single stride, I’m beside him, with my arm out at a low angle, as my mother used to do in the car if I were sitting in the front seat and she had to stop short.  “Back away from the gate,” I order.  Instead, the boy flicks the iron barrier, pointer finger to thumb, as you’d do a guinea marble.   

“Can’t hear you,” he says, lifting the gigantic headphones from his ears and letting them snap back.  “You need to chill.” 

Once the train has passed, I take a slow breath to try to calm down.  I want to ask if his parents know where he is and what he’s doing out at four in the morning.  I want to ask what he’s listening to.  I want to ask something, but I don’t know what it should be.  This is not just because his presence worries me, but out of a sense of awkwardness, too.  There’s a strange intimacy to two strangers standing close on a curb.  I work the rosary, rock back on my heels, and look up as if studying the sky, which is lightening to a lint grey over the telephone wires.  The owl has settled on one of the poles.  His ear tufts are raised.  We’re on his turf.   

The kid presses the walk button and waits for the signal, even though there’s not an automobile in sight. “See, safety first,” he calls over his shoulder and crosses with a loping, uneven stride.

At five, with only an hour until the end of my shift, the baby monitor’s light begins to flicker.  The static goes, then the receiver gives three bleeps, and falls dark and silent. Another rush of adrenaline washes through my arms to my wrists, from my gut to my knees.  I can picture the drawer, to the right of the sink, the triple As in the space above the forks.  If only some neighbor would come walking by, I could tell them where the batteries are.  Anyone, even that punk from my high school.  I’d give them my keys.  And now, 5 a.m., is a bad time—Father sleeps lightly in the morning, wakes early.  He’s hungry, he needs his meds, his blood pressure’s low.  He broke his elbow a year ago trying to make his way to the kitchen for breakfast.  I wait until the next train passes and no one is in sight.  I scan the tracks, the grade, the shrubbery poking through the chicken wire fencing.  In the beam of my flashlight, far off, I think I see a blur of orange, but on a second look, it’s just the pulsing blobs that drift over my vision every time a car or train’s headlights pass and dazzle my retina.  Scan again, one, two, three, no one there.  The next train isn’t supposed to come for another seventeen minutes and so I make my dash. 

At home, Father seems to have barely moved.  My hospital corners are still crisply tucked, and I fly through the kitchen and back from the house to my post with my new pack of batteries.  My two jackets swish around my ears, I’m sweating like crazy, and my damp and shaking palms render it briefly impossible for me to get the batteries out of the hard carapace of their plastic packaging.  But I manage.  I slot the little missiles into their silos.  The red light perks up.  There’s static, acoustic guitar, an infant crying.  I point the nubby antennae in the direction of Father’s bedroom window, and hear him breathe.

Ibrahim arrives at six with a red cooler and two steaming Styrofoam cups of coffee.  I take one and gulp and it’s not too hot and very sweet. When I offer to pay him he looks insulted.

“How did the night go?” he asks.

 “Quiet,” I say, and hand over the “daily report.”  The coffee sloshes around in my empty stomach.  My eyelid won’t stop twitching.  I’m picturing home, my room, I can feel the texture of the green bedsheets on my fingertips as I pull back the covers.  But for some reason, I add, “Only a teenager out at four, in a Grizzly’s jacket.”

“He do anything funny?”

“No.  It’s just--concerning.  A kid, by himself.”

Ibrahim’s mouth hooks down.  “It’s not against the law.  You’ll learn what’s worth worrying about.” 

I’m still thinking about this word, worth, as I walk home, over the cherry blossom petals that have browned in the night.  In the kitchen, I make oatmeal and refill Dad’s pill box and we listen to the rebroadcast of yesterday’s Bird Calls of the Midwest. 

“Today’s show features the creeper, nuthatch, godwit, and chickadee,” announces the program’s host in a voice so gentle and slow as to suggest that a bird nearby might be startled otherwise.  “Did you know that our friend the chickadee adds in extra ‘dees’ when he is on alert and afraid?”

 At nine, I call a law school clinic at the university.  They can’t take the case, they focus only on asylum for women and children.  But the law student tells me Isidro could have been sent as far north as Colorado and as far west as Oklahoma, so I begin working my way through the map, through the Internet, hoping to find someone who will talk to me.  I try the Salvadoran consulate.  Isidro’s case seems futile, and yet somehow easier to solve than anything else right now.  I fall asleep waiting on hold. 

When I wake, we listen to the Turandot LP my mother loved.  Dad thumps my hand during “Nessum Dorma” then conducts the Swedish tenor through that famous high note at the end. He drifts in and out of sleep while I read aloud from his college alumni magazine.  The time comes for work, and I can tell it’s going to be murderous to stay awake.  Back on the tracks, I pace until my shins hurt, until the last dog walker has gone to bed.  I try chewing some Nicorette, which tastes like cinnamon but burns the inside of my cheek and makes me dizzy.  For thirty minutes I’m alert enough to want to crawl out of my skin, but nauseous too, and I’m relieved when the buzz finally wears off.  From there on, it’s only the trains that wake me.  I tuck the receiver into the collar of my jacket so I can hear my father if he stirs.  I pace, I pee.  I tell myself it’s too cold for anyone to commit suicide, though I know that’s idiocy.  I pinch my wrist, bite my lip, slap my face, stand, pace, sit, sleep.

At four, I hear the music before I see the kid in the track jacket.  He approaches, cigarette bobbing on his lip.  “Where’d you go yesterday?” he asks, lifting his headphones and releasing a barrage of death metal.  “I came back and you weren’t here.”

I fumble. “Bathroom break.”

“Don’t lie.”  He wags a finger.  His nails, like mine, are bitten to the quick.  His cheeks are stippled with a spray of acne, as mine were then, too.  He presses the walk button, waits for the signal, crosses the deserted street. 

The next night is easier.  The kid doesn’t show up.  The batteries last eight hours, but I still check on Father anyhow after the 4:44 freight goes by.  I’m adjusting to my nocturnal life, to Father’s sleepy daytime routine.  A week passes, then two.  I’ve made limited progress in our search for Isidro.  I’ve identified eight men named Isidro Pérez in detention along the southern border at this time, though we don’t know if Isidro would have given his real last name. A case worker from Medicare comes to inspect the house and I watch him climb and measure the stairs that lead to the house’s only shower and bathtub on the second floor.  He takes me aside, calls it “a death trap.”  When he leaves, I tell Father, “Dignity is maintained, but privacy is in abeyance.”  He grips my hand tight.      

It’s Wednesday night, and I’m off after this for 60 whole hours.  “TGIW,” I say as I kiss his scratchy temple and the healing scar there.  I slide into my heavy jacket and out the door to work.  It’s been a good week.  No falls, and money in my pocket, and I’m back at the grade as the last express to Chicago passes. I’m chatting with one of the regular dogwalkers, a therapist who works in the neighborhood and volunteers at the art museum on campus and wants to meet Father and has a rescue with some setter in her named Abby.  I’m telling her about being on academic probation and the three boxes of thesis research on Camille Claudel moldering in the garage with the snow shovels and the Chevy with the bad alignment, when from the baby monitor comes the sickening rustle and funny humming that means my father is rising from his bed.  For five seconds, I’m in denial.  Then, from between the drape of the white oak’s boughs, I see the bathroom light go on.  There’s a Suburban barreling down the street. Four people wait beside me on the railroad grade.  I take off at a sprint. 

Up the porch steps, and calling his name.  Father’s fallen in the bathroom—from the looks of things, he never made it to the toilet, poor Dad.  The place is a mess, and so is he.  I put a towel on the floor, a plastic yard chair over the towel, and Father in the chair and clean him up, and then the room.  Shoulder to cheek, I wipe my tears away.  Father’s more upset than hurt, it seems, or I hope.  Silent, a little dazed.  The only comfort is that from the window, above the curtain rod, I can see the tracks.  The boy in the orange jacket heading west, pale hands drumming the air.  The lawyer, rollerblading.  The therapist, who seems to be waiting for me.  I silently entrust her and Abby to guard the tracks.  Please.

I towel off Father, bring him a change of pajamas, and spoon us each a bowl of yogurt.  Into his I crush up a little extra Seroquel because my father is shrinking back from things I can’t see and talking about the nuns murdered in Santiago Nonualco and I’m trying to reassure him but one can’t rush reassurance with a delusional and prematurely old man about things so horrible.  I say, “they can’t hurt you, you’re safe with me,” but now he’s talking about Isidro and the cell and imagining him there, and his desert crossing.  “We can’t help, Meg,” he says, and I say, “I know.”  I give him water with a straw, find fresh sheets and then strip the bed, get Father there, and tuck him in so tightly he groans.  I keep my hand to his cool forehead until his mouth drops open and I know he’s asleep.  I change the monitor’s batteries and turn the dial.  I pick up one end of a telephone call, yes, yes, uh-huh, yes, then a few steps further, an advertisement for PayDay Loans in Spanish.  A baby whimpering, trying to settle.  Then static, and quiet breathing.

Back on the tracks, I think of Father’s sleeping face, how it looks like a death mask, and of the paper I tried but failed to complete about death masks-—Cromwell’s, Marat’s, L'Inconnue de la Seine.  I think about how one of the cruelties of Parkinson’s is that it hardens the muscles.  Father’s facial expression is most often a scowl.  I recall him telling me, years before, “There are 43 mimetic muscles, and Rodin knew every one.”  We had been in his studio, now his bedroom, where he was packing a hard-shelled suitcase with the tools of his trade, preparing for his upcoming trip to New York, to the Fresh Kills Landfill on Staten Island, where the terrible rubble of the WTC was being sorted.  Among it, and the reason for his journey, was a bust of Jean d’Aire, one of Rodin’s Calais Burghers once held in the collection of the Cantor Fitzgerald offices on the 105th floor of the North Tower—the “museum in the sky.”  The bust had been found a quarter mile away, dented, but intact. 

The lights at the grade begin their flashing and I rub my palms to my cheeks.  An Amtrak passes, its windows tinted blue, as if the entire train were filled with water and the hundred silhouetted travelers a race of aquatic people. Next, rolling stock, a mile long of hopper cars.  I’m trying to count them and I’m at 93 when something, or someone, catches my eye, moving in the chokeberry up the tracks. 

I scan the long trackbed and the sharp shale ballast.  There, beyond a tussock of weeds, something flashes silver.  It looks like the reflective logo on a kid’s sneakers.  I can see the train’s lights in the distance, a pair of bright eyes bearing down, and I switch the dial on my CB and blurt to the police radio dispatch “suspicious—activity” but then I can’t remember the protocol, or the right code, so I shout, “Someone’s on the tracks” even though I know the train can’t stop in time.  It’s going full speed, and we’re less than a quarter mile away.  I don’t see the figure anymore but I’m running towards it on instinct, towards the indistinct shifting mass lost in the oncoming lights, as I’m shouting, Hey, hey you, stop—but what I mean isn’t “stop” but evaporate, fly away, sprout wings, be anywhere but here.  I’m tweeting on my tinny whistle, so useless I spit it away.

Jacket swishing, feet thudding the gravel berm, my breath reedy and wheezing, and in the distance and closing in, the 115 decibel blare.  I stumble over a little mound of grass and catch myself, then stop, hands to thighs.  I’ve lost sight of whatever it is I was chasing.  I’ve dropped my radio in the sprint, and the baby monitor too.  I’m between stations.  The chokeberry is dense with thorns.  There’s no way for me to explain, False alarm, no one to say it to.  Please don’t fire me, I beg silently.  I can only flatten my back to the hurricane fencing and cover my ears against the horrific screech that is a long-haul train trying to come to a dead stop from its maximum speed.  

When I return home, Father is in the living room, sitting at the foot of the couch, from which he has slid down.  The telephone is off the hook beside him, and the Rodin book is open, and on its inner cover and title page he has written three groups of numbers in gigantic, tremulous penmanship.  “Isidro called,” he says and asks for a glass of water.  I right Father, bring him a drink, and study the Rodin book flap. 

Outside, soft rain spatters the windows.  I watch a black capped chickadee land on our empty bird feeder, sending it swinging.  He sings, sweetie, sweetie, sweetie.  I want to tell Father what happened at work today, but I’m not sure if he’ll understand and it might only frighten him.  And I’m just as glad for the excuse not to report once more how his daughter has faltered—the formal warning and probation at work, the fine for the lost radio, Ibrahim’s frown and the gentle question, “You sure you’re up for this, Meg?”

  I shower, I try to eat, I lie down, but my hands are still shaking, my pulse tom-toms, and at nine I finally get out of bed.  At noon I phone an immigration lawyer in LA.  Press one for English, para Español, oprima dos.  I finger Dad’s checkbook in the desk’s shallow pen drawer.  I flip it open and am reminded of all the times I asked him for money.  The checks are interspersed with the financial trail of my mother’s decline—insurance co-pays, the trips to the Mayo Clinic, the private nursing agency.  After her death begin the bi-annual donations to Amigos de las Americas, a few hundred dollars at a time, which by then we could ill-afford but which filled our home with a steady supply of grapefruit.  They always arrived cushioned on beds of straw, in a slatted wooden box.

I’m still on hold.  Somehow Father thinks I’m calling El Salvador. 

“You’ll tell Don Chepe,” he says, confused, naming Isidro’s father.  “You’ll tell Don Chepe we can’t do it?” On second thought, though, maybe Father hasn’t confused the names. Maybe this is what he means to say.

“Don’t worry, Dad,” I cajole, and he gives a single hoarse laugh in reply, because to not worry is absurd.  Strangely, I feel proud, lighter.  My father just laughed, and I’m here with him.  I pace, trailing the telephone’s springy coil cord behind me across the carpet. 

When I finally get through to a real person, it takes me longer than it should to explain the situation. I’m distracted by the noises around her, the song and clang of a dozen tongues, the clack of computer keys. I wander back into Dad’s old studio and close the door and begin to tell our story. I fetch the book with Isidro’s detainee ID number written inside and read it to the receptionist, twice. I realize that any check I write will bounce so I find our newest credit card instead. Outside, a train passes, and another. I stand at the window, awaiting the 12:19, watching the tracks, in case Ibrahim is on a break, or looking the other way, or might have fallen asleep despite himself. I run my hands over Father’s tools, as if selecting between them, as if planning for him to repeat that journey to Fresh Kills to restore the bust from Rodin’s Burghers of Calais. As if helping Isidro were only a question of taking dowel, scalpel, brush and file to hand and beginning to work.

What I Haven’t Lost

By Roberta Schine

The only other person on the elevator tugged at my backpack as I was getting off on the fifth floor at Mount Sinai Union Square Hospital. I was about to teach my chair yoga class for people with Parkinson's. She said, "Excuse me, ma'am, your backpack is open. Should I close it?" Before I could answer, she continued, "There, I closed it. Be careful next time."

Twenty minutes later, my students were parking their walkers and canes and slowly settling into the chairs I had arranged in a circle. Suddenly, a security guard came into the room and handed me my wallet. Someone had found it on the elevator floor and brought it to his desk in the lobby. I told him about the woman in the elevator who “closed” my backpack. “Yeah,” he said. “You were pick-pocketed. It’s been happening.” It was a creepy feeling. The cash (about $30) was gone. Everyone started offering to give me money for bus fare to get home.

Gerrard suggested I should be grateful that my driver’s license and credit cards were still there. I agreed. I pulled myself together and began the class with a short meditation on the question, “What haven’t I lost?” Then, I asked the group to share. They responded in barely audible voices (typical of people with Parkinson's). "The love in my heart." "My sense of humor." "I still feel compassion." "My husband." “I haven’t lost my electric wheelchair."

Fred, who once told us his grandson calls him “Grandpa Grumpy,” was the last to speak. "Nothing” he growled. “There’s nothing I haven’t lost. Parkinson's has taken everything from me: Friends, my job… I can’t take pictures because of the tremor… And I hate these ‘Parkinson’s-is-a-gift’ Zen discussions.” The room got tense. I took a deep breath and hoped the right words would come out of my mouth. My work isn’t for sissies.

Then, tiny Simone, who always sits next to Fred (the chair on his other side always remains empty), touched his arm lightly and said, “C’mon Fred. There must be something you like that you still have.” “Well, okay,” he finally conceded. “These free yoga classes – but they’re not as good as the free boxing ones. And I don’t hate all of my doctors. But I still think these discussions are stupid." A younger man in the class said, “I know what you mean, Fred.” Several people nodded their understanding. Fred lowered his head.

We continued the class. I led some gentle stretches, light strengthening exercises and something my students call “face aerobics.” We stood behind our chairs and lifted one foot at-a-time to improve balance and then worked on posture as we moved around the space. When I said that pressing your hips forward could help you stand up straight, Janine quipped that it made us look sexy. Everyone chuckled. For voice practice, two people at a time pulled their chairs to opposite ends of the room and had a conversation. The distance forced them to speak loud enough to be heard. Class ended at 8pm. People helped each other put on and zip their coats. It took forever; coordination is an issue for people with this movement disorder. I always tell myself that maybe next week I’ll end a little early so I can get home in time to eat dinner before I watch the news. I never do.

Finally, my students were saying their good-byes. I heard Fred ask, “Hey, does anyone want to go out for coffee?” That was followed by a chorus of yesses.

I didn’t take money from my students for bus fare. As I walked the five blocks home on 14th St. I caught a glimpse of myself in a store window. I was smiling.

Bios

Holly Thompson (www.hatbooks.com), raised in New England, is a longtime resident of Japan. She is author of the novel Ash and three verse novels for young people: Falling into the Dragon’s Mouth (featuring a supporting character with Parkinson’s), The Language Inside, and Orchards, winner of the Asian/Pacific American Award for Literature. She is also author of the picture books The Wakame Gatherers, Twilight Chant, One Wave at a Time, and the forthcoming Listening to Trees: The Woodworking Ways of George Nakashima. She writes poetry, fiction and nonfiction for children, teens and adults, serves as Co-Regional Advisor of SCBWI Japan, and teaches creative writing at Yokohama City University. Her late father, a dentist, lived with Parkinson's for over twenty years. He loved cutting wood, working in the woods, crafting with wood. He taught all his children which sticks made the best kindling, how to cut and stack wood, how to use the chain saw. He made wooden lamps, sculptures, flag poles, and later, even when Parkinson's made handwork nearly impossible, he carved bowls and spoons, and, still later, oiled and rubbed them for comfort. When his legs wouldn't cooperate he crawled. When he could no longer cut wood he gathered wood. And when he could barely do that, he continued to gather kindling on his knees.  He also loved to row. He'd rigged a canoe with a rowing apparatus. Late in his Parkinson's journey, when it was too dangerous for him to go out alone on the lake, he'd go anyway, and Holly would race to follow in a kayak, enjoying those dawn adventures until he froze, and she had to prop him up and tow him to shore. This was the inspiration for Water Striders.

For 50 years, Brian H. Peterson has been a passionate explorer of the creative life, as a musician, visual artist, museum curator, critic, scholar, and critically acclaimed author. Peterson’s photographs are in the collections of more than a dozen major museums including the Philadelphia Museum of Art, the Amon Carter Museum, the Virginia Museum of Fine Arts, the Denver Art Museum, The Milwaukee Art Museum, and the Library of Congress. As the Gerry and Marguerite Lenfest Chief Curator at the Michener Art Museum (1990–2013), he managed the exhibition program, curated historic and contemporary exhibitions, and was the editor and principal author of the landmark publication Pennsylvania Impressionism (University of Pennsylvania Press, 2002). Also the author of three collections of essays—The Smile at the Heart of Things (2009), The Blossoming of the World (2011), and I Give My Eyes… (2018)—Peterson has contributed critical writing to the Los Angeles Times, the Philadelphia Inquirer, American Arts Quarterly, and The Photo Review. In retirement he has taken up videography while continuing his work as a writer and photographer. His 1981 song cycle “Moon Songs,” based on the poetry of E. E. Cummings, was featured on the CD Modern American Art Song (Albany Records, 2015) with mezzo-soprano Sharon Mabry.

Sarah Beth Childers is the author of the essay collection Shake Terribly the Earth: Stories from an Appalachian Family. (Ohio University Press, 2013). Her essays have also appeared in Brevity, Pank, Colorado Review, Quiddity, Guernica, and elsewhere. She lives in Stillwater, Oklahoma, where she teaches creative nonfiction at Oklahoma State University, she serves as the nonfiction editor of the Cimarron Review, and she tries, usually unsuccessfully, to keep her toddler from tearing the covers off her books.

Andrés Cerpa is the author of Bicycle in a Ransacked City: An Elegy (2019) and The Vault (2021) from Alice James Books.

Helen Mirkil is both a poet and visual artist. Her first poetry collection is entitled Sower on the Cliffs, poems and drawings (BookArts Press, 2013). Mirkil’s poems are also published in Apiary (online), Ruah, Bucks County Writer, The Griffin, Art Times, Sojourners, Pilgrimage Press, Offline, 2014 Moonstone Anthology of Featured Readers, Philadelphia Says: #METOO, Sun Dancer (video), and dippingintolight.com. Helen is a grandmother and a compulsive recycler.

 Cynthia Andrews is a veteran of the NYC poetry circuit, and has had readings in such venues as The Knitting Factory, Cornelia Street Café, St. Mark's Church, and The Nuyorican Poets Café, where her performance was one of the first to be archived at Poet’s House. She has been widely published in various literary journals and anthologies, including ALOUD: Voices from the Nuyorican Poets Café, The Voice Literary Supplement, The 2020 Beat Poets Anthology, Long Shot, Red Fez and Tribes Literary Journal. She is the author of two chapbooks: Saving Summer and Homeless (The New Press), and one poetry collection: A Little Before Twelve (Poets of Queens). She has been a favored guest poet on cable TV and radio, including Teachers and Writers in the Morning and WBAI New York. Nominated for a Pushcart Prize twice and a finalist for the Downtown Year of the Poet award, she holds an MFA in Creative Writing and resides in Queens, New York.

Hal Sirowitz is an internationally known poet and the author of five books of poetry, Mother Said, My Therapist Said, Father Said, Before, During & After, and Stray Cat Blues. The former Poet Laureate of Queens, his work has been translated into fourteen languages. He is a co-creator of the Parkinson’s Poetry Project.

Minter Krotzer's prose has been published in many literary magazines and anthologies, including Before and After: Stories from New York; Louisiana in Words; and Hint Fiction: An Anthology of Twenty-Five Words or Fewer. She has received creative writing fellowships at the New School, where she received an MFA in Creative Nonfiction; Bennington College; the Virginia Center for the Creative Arts; the Squaw Valley Writers Conference; Ragdale; and the Moulin à Nef in France. She is a co-creator of the Parkinson’s Poetry Project.

Sara Houghteling is the author of Pictures at an Exhibition, a New York Times Editors’ Choice Book and a finalist for the National Jewish Book Award. A recipient of the Narrative Prize, a French Fulbright, and a fellowship from the NEA, her work has also appeared in The New York Times, Narrative Magazine, and the San Francisco Chronicle. She is currently a lecturer in the English Department at Stanford University.

Susan Brennan is a poet, screenwriter and activist. Her poems can be found in her chapbooks and book, Blue Sirens (Dancing Girl Press), numinous (Finishing Line Press), and Drunken Oasis (Rattapallax Press). She curates poetry programming (WanderWord) at Wilco’s Solid Sound Music Festival, MASS MoCA. With a circus-arts company, she co-produced and staged her poem Chromoluminarism about Georges Seurat’s final painting (RGB NYC). She has written film scripts, a 1 million hit plus award winning web-series, pitched film stories, and co-produced a short film, of which have premiered at Austin, Venice and Tribeca Film Festivals, as well as a screening at MoMA. See what she’s up to at www.tinycubesofice.com.

Roberta Schine is a yoga instructor, immigration activist, and writer. She teaches yoga classes for People with Parkinson’s and for People with Cancer at Mount Sinai Union Square Hospital and has been a presenter at the National Institute of Neurology and Neurosurgery in Mexico City. Her stories, which she writes in English and in Spanish, have appeared in Portside, Art and Understanding, Bordernews, 50 Word Stories, Hawansuyo (in Spanish), Perigrinosysuslettras (in Spanish) and in other literary publications.

Kevin Hinkle is a poet and visual artist based in Asbury Park, New Jersey. His poems have been published in Impossible Archetype, SurVision, and Naugatuck River Review. A Few Bruises Better, his first chapbook, was published in 2020 by Finishing Line Press.

VA Smith lives in Fairmount, Philadelphia, her adopted city, where she reads and  writes,  hikes and bikes, serves as a home chef/caterer  and interior design wanna’ be, and loves on her family and friends. She feels gratified by long and hard-working career teaching in the English department at Penn State University, as well as serving as the founder and CEO of Chancellor Writing Services, a coaching service for student writers from middle-high school, college through graduate and professional school. VA has published in Review, The Southern Quarterly, Southern Review, Pure Slush, and West Trade Review. She is honored to appear in this publication and dedicates her poem to her late mother, Betsy Garman Smith.

Cynthia Andrews is a veteran of the NYC poetry circuit, and has had readings in such venues as The Knitting Factory, Cornelia Street Café, St. Marks Church, and The Nuyorican Poets Café, where her performance was one of the first to be archived at Poet’s House.  She has been widely published in various literary journals and anthologies, including ALOUD: Voices from the Nuyorican Poets Café, The Voice Literary Supplement, The 2020 Beat Poets Anthology, Long Shot, Red Fez and Tribes Literary Journal.  She is the author of two chapbooks: Saving Summer and Homeless (The New Press), and one poetry collection: A Little Before Twelve (Poets of Queens).  She has been a favored guest poet on cable TV and radio, including Teachers and Writers in the Morning and WBAI New York.  Nominated for a Pushcart Prize twice and a finalist for the Downtown Year of the Poet award, she holds an MFA in Creative Writing and resides in Queens, New York.

Bill Tope has been published in Chantarelle’s Notebook, scars.tv, Potato Soup and other mags. He lives in Wood River, IL.

Walking the Line – An Anthology of Parkinson’s Writing (Spring 2021 edition)

EDITED by Susan Brennan, Hal Sirowitz, and Minter Krotzer.

POETRY by Sean Denmark, Dorothy Friedman-August, Deborah Fries, Maria Mazziotti Gillan, Gerard Sarnat, Hal Sirowitz, and Minter Krotzer.

STORIES & ESSAYS by Deborah Fries, Ann Mintz, Janyce Stefan-Cole, Betty Pollack Shapiro, and Hal Sirowitz.

PLAY by Cary Mazer.

Hypomimia

By Deborah Fries

My father’s laugh embarrassed me. On those few occasions that he took me to our small-town theater, which played cartoons before features, I wanted to slink down into the seat when he laughed. His laugh was too deep, too loud, too raw, too bellyful. The movies were for kids and so, I believed, were cartoons. That his laugh could be heard over all the children’s laughter made me cringe. I didn’t think the slapstick adventures of cats and dogs and mice were funny, and I didn’t laugh along with him.

Kids are usually embarrassed by their parents. With my mother, it was her impulsivity, her pretensions, her theatrics—her general Blanche Dubois-ness. I found her behavior embarrassing when we ventured outside the home, when she put on an aspirational persona. But with my dad, it was just the opposite: I hated his guilelessness, his corniness, in or out of the house. I would have exchanged them both for smart, sophisticated, self-aware parents whose expressive behavior met my standards.

My mother’s histrionic personality became the soundtrack of my life: her laughter, her anger, her sarcasm, her delight in being the center of attention. I knew her best, and without reprieve, unlike my father. For the first eight years of my life, my dad was a traveling salesman who left on Monday and returned on Friday. When he was home, he was often tired or in pain, still dealing with his WWII back injuries. I couldn’t read him, but I could feel him recoiling from unnecessary interaction. She had the big, needy personality. He was more of a low-key visitor. He was more of a secret drinker. He was the visitor who laughed too loud.

Off all the things that Parkinson’s took from him, the theft of facial expression seems particularly cruel. Being in sales must have been exhausting for an introvert, who had to be on, who recharged through withdrawal when he came home. We both tended to live inside our heads—once traveling for more than a hundred miles without speaking, him looking straight ahead as he drove, me looking out the window. Alcohol could give him a burst of animation, but as he got older, his energy powered down and he became even less expressive.

The mask of Parkinson’s that is evident in photographs is in many ways, a continuation of his gradual lack of affect and withdrawal from the outer world. We didn’t interest him. I’d come to visit after not seeing my parents for a year and he’d seem engaged for about an hour, then retreat to another part of the house. His lack of expression was deeply insulting to a wife who demanded to be seen and heard, and to his daughters, it was a closed door to all his secrets. 

It was not unusual for WWII vets to remain silent about their war experiences.  My father’s 7th Army Division landed in France in 1944 and made a rapid advance through Germany. They were first to penetrate the Siegfried line and first into Munich. They were two hours away from Dachau, where they would liberate 30,000 prisoners of the infamous concentration camp, when my dad was wounded. Did that haunt him, that he’d never made it to Dachau? Could he have dealt with what they found there—the box cars filled with corpses, the wild, reactive frenzy of shooting Nazi guards?

I will never know my father’s stories. The Army’s letter that accompanied one of his Bronze Stars states: 

During his command, Fries supervised maintenance and clearance of routes of communication, clearance of mine fields and building of bridges. He also supervised demolitions and the operations of the company when operating as regimental security, including the demolition of portions of the Siegfried line.  He was responsible for the technical and tactical training and administration of a unit of 172 enlisted men and 5 officers.

His wartime heroism—his drive, his energy, his leadership—are hard to align with memories of the passive parent who had so little left over for domestic life. Parkinson’s had put him back in the body cast he’d worn home from France. The officer who’d cleared communication routes and built bridges in Germany was unable to allow others to connect, to reach behind the mask and understand his past or present. The flatness of hypomimia left him deeper in a well of stories we’d never hear. 

Some days I catch my own slack reflection in the black screen of a phone or tablet and quickly look away. That familiar resting blank face is one I can still animate at will. My secrets are just below the retrievable surface if anyone wants to know them, and I am capable of unfiltered reactions, unrestrained laughter, of being unable to hide displeasure and contempt. I am lucky. I can be too expressive. I can embarrass my daughter.

Winter Woods

By Ann Mintz

A man stands in the winter woods, smiling at the sky.  On his shoulder, a patch that reads NYSP.  New York Ski Patrol. My God, my father was handsome when he was young.  Not that he was very young when the picture was taken— probably in his late 40s, shortly after I was born.

My father loved to ski.  Russian by birth, he loved the cold.  He taught me to ski when it was a solitary pursuit.  When wooden skis needed the correct wax for the temperature and the condition of the snow.  Corn snow.  Powder.  Ice.  We’d climb to the top of the run or grab a simple rope tow, ski down empty slopes.  

When I was thirteen, we made our annual trip from New York to Stowe in Vermont.  We loved the Toll Road, a two-mile-long, gentle run we’d been skiing together for years.  When we reached the top, he realized that his Parkinson’s Disease had progressed too far for him to ski to the bottom.  He had to call the ski patrol to bring him down.

Neither of us ever skied again.

My Sister’s Diagnosis

By Janyce Stefan-Cole

I always assumed my sister and I would one day share a room again, as we had as kids when she was older and worshipped, unrequited, by me. We are nothing alike, and probably haven’t been from day one, so my need for her to be my role model and guide was likely misplaced. I was not aware of the idea of us pairing up again until I learned she was suffering from the neurological disorder known as Parkinson’s disease. There had been signs, building like blips on the radar as the enemy approached; denial until it was unavoidable to her and everyone else in the family that something was wrong. 

Like my semi-conscious assumption of us in twin beds again, in a room somewhere (an old people’s home, assisted living facility—I never got that far), the symptoms lay undercover. Her tennis serve was off, the left hand not behaving as commanded; a fork in that same hand not consistently receiving confirmation from hand to brain (or the other way round) that it was in place and operational—all of this subtle; melting ice no one is paying attention to; creeping bits of information the mind does not know how to process. What name does one give to a misbehaving limb, a serve off for no apparent reason? It was seeing her walk towards me on 66th Street in Manhattan that finally made me speak up. We were meeting our colorful old Aunt Ozie and kindly, if dour, Uncle Bill for lunch, and my sister stooped, her gate mincing like a pony unsure of its footing. I blurted out, “You need to take yoga or something; your posture’s gone to hell!”

I don’t remember her response or much about the lunch that day. She was too young for Parkinson’s, typically thought of as an old man’s disease. She is tall and beautiful. That old lady stoop did not go with her five-foot ten frame. It read like an insult. I do know she picked up the check for lunch; my relatives and I no match for her generous financial standing. That wealth would soon serve her well, bringing movement specialists and physical therapists into her home to re-teach her how to walk, to use her limbs in ways that offset the effects of dopamine missing in her brain. Like the tennis serve and the uncooperative fork, her feet became cause for further doubts. Was she stepping up a curb when she thought she was? Staircases were worse. She was taught to think as she walked: “I am going up stairs, one-foot, other foot,” and so on. I suppose, like anything else, good training ultimately makes think-walking second nature. Imagine, though, not being able to run at will, stand up quickly, slice a piece of cake the way you always had. Imagine beginning to doubt every activity once taken for granted. Imagine doubting that you want to carry on; bouts of depression, along with diminished taste buds, are symptoms too.

My brother-in-law calls her his hero. She has shown grace under pressure, and then some, has managed to understand others are even less fortunate than she. I don’t know that I would be able to do that, fend off anger and self-pity as she does. She did say to me one day that she cannot imagine going on for twenty more years this way. It wears one down, I said, trying to be helpful. 

As her condition worsened, I found myself confused. Not about what to do; my job as I see it is to let her be as normal as possible. Talk about her ills without pretense or false hope, but talk regular stuff too, even if that means chattering away: distraction and inclusion. My confusion arose from being unprepared. Our family enjoys longevity and good health. I’d figured out, however imperfectly, a way to survive growing up, but I have not figured out how to stand up against disease. I think about parents with terribly ill children, leukemia, say, or tumors; about droughts and famine, about a world of indiscriminate suffering and I’m not sure how to get on top of that reality. If knowledge is power, my sister’s diagnosis has given us both an education neither of us would ever have chosen.

Okay, she did not return my long ago need to worship. Once she went so far as to create a border in our room using shoelaces, a Maginot Line I was not meant to cross even though my bed stood behind the line. I may have been impossible at times, in that annoying way adoring, half jealous younger siblings can be (one of my specialties was copy-catting; waiting then ordering exactly what she ordered when the family ate out), but she was my older sister then and is my older sister still, even if I have to help her walk or get her her breakfast. Mornings are especially tough with PD, starting with getting out of bed on an uncooperative musculature. 

That meant no more holding grudges. I remember the first terrified day of kindergarten, as soon as my mother left me off, I ran straight under the teacher’s enormous desk. I also wasn’t done with the life of perpetual play. My sister was called down from her third-grade classroom to address the issue. I heard the teacher, and I think the principal telling her to urge me out. I refused. She crawled in and told me to come out. I refused a second time; I’d come out if we could go home. Out of hearing, probably in a hot whisper, she let me know one on one: Come out or else. And she very likely added a sharp pinch to my skinny arm. Out I came, anxiety and shyness unanswered. I yielded to her authority.

Years later, she greeted me open-armed when I returned from Mexico, the prodigal little sister back in the fold. No mention was made of past wounds. We agreed—some silent how—to show each other goodness. If that meant burying part of myself, fine, I’d split around us getting along; circle the square. I can’t say what hoops she went through to incorporate me into her uptown world, but I have gone beyond good will. I have committed, let her know I can be trusted, that I will be there for her. How do I know that this is true? I don’t. I might let her down. I’ve had to sometimes turn away, imagine a big desk to crawl under. I’ve gone numb, seeing her suffer. I’ve wished for a magic wand to stop the appalling dyskinesia, her limbs flailing in uncontrolled motion. I’ve wished not to care, to go back to the old doubts and hostilities so I could walk away, knowing walking away is no longer an option.

She’s had four surgeries; Deep Brain Stimulation electrodes implanted in either front lobe, and the batteries to run them, one placed beneath each collarbone. Her brain had to be pried into twice to place the — wires? — I’m not sure exactly what they are. Rows of mean looking staples held her head closed, and four more holes were drilled on both sides of her lower head to connect to the batteries. She had to be awake for the lobe implants; heard the drill enter, smelled the hot flesh of her opening skull. I was in Los Angeles for the lead up to surgery number one. She stopped wanting to chat. She was shutting down in fear. (Who wouldn’t?) We are as different as ever, and I was far away again, but I would not let her off the hook. I kept calling, working out the three-hour time difference. Let’s walk through this, I said to her, look fear in the eye, let’s take some of the mystery and sting out of old Mr. Scary; get at the core of the beast.

I’d become the older sister. 

She improved, but it’s a temporary fix. A matter of a few years perhaps before the brain stops accepting the electrical stimulation, maybe figures out it’s been had. We take it one day at a time. I’ve seen glimpses of her old self, including some of the things that used to make me cringe, but that’s good, that’s normal, for her to tell me impatiently in the grocery store to hurry up. Her voice is lower and the childlike sparkle in her eyes, born of constant suffering (suffering to the point of insanity?) is dimmed. Recently, there was no glimmer at all. I think she will shine again, if only briefly; a star with a last burst of energy. She has that sort of courage.

I don’t think we will be sharing that room after all. I can’t say why I thought we’d be bunk mates again; some primitive notion of returning to the beginning, a rounding out of who we have become; a circle closing? It did occur to me that I assumed she’d always have my back. She may have shooed me away from her older-girl friends, or sometimes pretended I wasn’t there, but she’d also stop me in school hallways to pull my perpetually straying hair back into a ponytail. In her, way my sister had her eye out for me and, in spite of all that has happened to her, I think she still does. We’d probably have made a better go of it, sharing a room the second time around, we’d know how fragile life is and behave accordingly. That’s what I tell myself, but mostly I don’t understand anymore what I thought I understood about how things work. Or don’t work. And for that I rebel. I object to this disease happening to her or to anyone. I object.

I know a sister never leaves. That shared gene pool, the way we sometimes finished each other’s thoughts, a hidden, shared signal. The way we’d never let each other go. No matter what.  

“My Sister’s Diagnosis” was previously published in The Healing Muse Journal

Dear Parkinson’s

By Betty Pollack Shapiro

  You, lousy you; I hate you.  Why did you come into my life? You can’t even answer. You’re just there. There. There. There. And you always will be. At least with the breast cancer, as awful and as scary as that was, it could be cut out, and I was lucky enough that when it was cut out, it was completely gone.  But you are insidious. You just worked your way into me, slowly adding symptoms, ’til you couldn’t be denied, and I was finally diagnosed. You didn’t even allow yourself to be easily diagnosed. No early treatment for you, huh? Not your style. Well, that is my style. You make me feel so angry, so betrayed. This is not what I thought would happen to my body at this age. I feel that I have NO control. And that is very frightening to someone who tries to plan, be organized and take the best care of herself. It’s almost like you’re the bully—the tough guy, and I’m defenseless. I feel defenseless. I have medication and strategies, but with the mood I’m in now, that does not seem sufficient. So, what am I supposed to do, Parkinson’s? Oh, that’s right, you’re not talking. You don’t care about me!

  You’re the big bad wolf (but I can’t catch you, like in The Three Little Pigs. We don’t have a working fireplace.)

  I fully intend to do my best to function as well as I can despite your presence. You are up against a fight, Parkinson’s. I only have this one life, and I want it to be as wonderful as it can be despite you. I want to set a good example for my children and demonstrate how to live a quality life in the presence of obstacles.

  Parkinson’s, this is very effortful. Are you aware of that? Do you care?

  But you can’t go away. The process has begun. You’re stuck with me, and I’m stuck with you. I’m imagining you trying to slither out of me and attach yourself to another person with Parkinson’s who won’t fight back as efficiently as I do. It is impossible for you to get out. You are stuck, stuck, stuck. You have a life sentence. Oh, my, I better stop this line of thinking before I begin to feel sorry for you. Heavens no, you wretched disease, you. There are far worse diseases I could have. I think I will count my blessings.

Zombies are Loose

By Hal Sirowitz

Having Parkinson’s in a marriage is equivalent to the old B Hollywood Movie, "I Married a Zombie." I got to like being a zombie. It was ultimate bliss. I didn’t have to respond to safe conversations, like ‘Who do you think will win the Oscars?’ Instead of saying in an obtrusive manner, ‘Frankly my dear, I don’t give a damn,’ and walk away in your best Clark Cable imitation manner, I just make sure my Parkinson’s mask is on tight – the other person can’t see through the cracks – and go to Neverland. If in sports, the best offense is a good defense, then I’m way ahead on any count. For years, I dabbled in Zen Meditation. But I never knew Nirvana until I got Parkinson’s. It’s like being in the womb again. There’s no pressure to respond. Because you can’t. 

It shouldn’t be discouraging being diagnosed with Parkinson’s. It’s like a chance  to be an extra in a John Carpenter movie, "Invasion of the Body Snatchers." Your body is literally snatched away from you. You’re not given a new body. It’s just that the old one is different. You have the blurring of the usual sensations and then new ones, like genuine hallucinations not inspired by LSD or any other hallucinogen. I’d used to see people in cars. But when I got closer, I saw it was just the head seat. Those hallucinations kept me from being lonely, because as soon as I discovered it was just a mirage, the next car seemed occupied. It’d go on like that until I came across a real couple in their car seats smooching. I’d quickly look away before I was caught spying. You don’t have lust for someone’s blood like the typical Hollywood version of a zombie, but the lust to be alone. You’re no longer social. You just want quality time by yourself so you can avoid the slings and arrows of outrageous fortune, to quote Shakespeare. 

What does a Parkinson’s mask look like? It looks no different than the face of exiles. 

Their pain of losing their homeland is expressed in their faces. They don’t look at you or the camera. They have that faraway look as though they’re back on their land, inside their communities again. Whereas the Parkinson’s patient looks as though he’s losing his body. It’s not unlike a Picasso mask, (who was influenced by African masks). What I’m saying is that it’s not an exterior look. It’s like looking in the mirror, but the mirror is black – it doesn’t reflect you or create new sensations in the viewer. It’s like looking at someone and getting lost in their alternate universe.

There are other ways of acting obtuse, but Parkinson’s provides the best excuse for being that way. You can frustrate your friends and further hinder your enemies by crawling into that turtle shell specifically designed for you by the disease. 

I’ve been accused of shoplifting two times – pre-op and post-op. I didn’t think I was doing anything that might have warranted those accusations, except for knocking over one or two items. But I’d always pick them up, placing them in more or less the exact spot where I thought the collision had occurred. In one store the clerk spoke to my wife like I was invisible. "What disease does that guy have?" she said. "My Aunt had Parkinson’s and she didn’t look as bad as him. He must have one of these new types, like one of those viruses going around. I’ve never seen that type of Parkinson’s. Do you think it really is that? It could be something worse."

 Post-op, I was in a 99-cent store, looking for bargain books. They had "Conversations with Grouch Marx." I thought he was dead. He was, but that didn’t stop the book company from making a few bucks. He was talking like he was still alive. The security guard approached me and told me to open my coat. I wasn’t sure whether I had a shirt or just undershirt underneath. I soon found out I had a shirt. She had unzipped my jacket. When she walked away at first, I felt relief, then anger. 

Just because I wear a Parkinson’s mask doesn’t make me a criminal. Not everyone with a mask is bad. Look at the Lone Ranger. Look at Superman. Doesn't the Lone Ranger wear a mask? Doesn’t Superman have a hidden identity? The good don’t just die young, as Billy Joel sang, but also get accused of shoplifting.

 Previously published in Beauty is a Verb

A Puppeteer with the Palsy Apologizes to his Puppet

A short play by Cary Mazer 

(Adapted from the full-length play,
A Puppeteer with the Palsy Performs Scenes from Shakespeare, or, The Ghost in the Machine.)

                                         Scene:  London, 1817.

The Puppeteer, in his workshop, seated among his puppets.  He selects a puppet of David Garrick and with enormous difficulty puts his right hand through the puppet’s body and into the puppet’s head; his left hand, stiff and awkward, is barely able to help.  As he raises the puppet, it springs magically and expressively to life, even though the puppet’s arms and body hang limply.  The Puppeteer looks deeply into the puppet’s eyes, like Hamlet contemplating Yorick’s skull.

THE PUPPETEER

The doctor today was sympathetic.  He genuinely was.  Yes, I could tell that he was delighted to have seen another patient with my, er, disorder.  But he was genuinely sympathetic, especially when he learned that I made my living creating pieces for the theatre.  He suggested that the disease might not impede my career.  I told him that I write pieces for myself to perform, that I am the one and only person who can perform them.

                                         (Using a different a voice to represent the doctor.)

“Then perhaps you can use only one hand,” he said.  “When you gesture.  Just gesture with your right hand.  You can place your stiff left hand suavely in your trouser pocket.”  Then I explained to him that I am a puppeteer.  A master puppeteer.  The Master Puppeteer.  I must have the use of both of my hands to perform.

                                         (He chuckles bitterly.)

“The shaking palsy.”  That’s what Doctor Parkinson called it today, when he examined me.  I don’t shake - not much, at least.  For me it’s mostly stiffness, in just my left hand.  But he still calls it “the shaking palsy.”  He just published his first article about the disease.

                                         (Pause.)

Ah, my dear Mr. Garrick, my dear puppet friend.  I fear that all this, however much it costs me, is particularly unfair to you.  You have been my onstage companion for my entire career.  I perform by making you act.  The real David Garrick, the greatest actor of his day, perhaps of all time, retired from the stage 41 years ago, in 1776.  He’s been dead for 38 years now.  But I have given him a second life through you.  I have used my hands to animate the machine that is your body; but now, with only my right hand to pump life into your mechanism, I can move only your head and mouth.  Oh, Mr. Garrick!  Your hands - oh, your hands were so expressive!  That moment when, as Hamlet, you saw your father’s ghost, your fingers quivered, one arm outstretched, the other drawn back as, on an intake of breath, you uttered, “Angels and ministers of grace defend us!”  Spectators would swear they saw your hair stand on end.  The painters painted you in that moment, the pottery-makers etched your image onto plates and made porcelain figurines of you.  The great thinkers of Europe, even the great scientist Georg Christoph Lichtenberg, came to Drury Lane night after night to see you make that hand gesture, just to figure out how you made that moment so lifelike.  I was only a teenager when I saw you play Hamlet, but I will remember it until my dying day, if the shaking palsy doesn’t rob me of my memory before that day comes.  That moment, that gesture, made me want to become an actor.  But now your puppet hands are immoveable.  My stiff left hand, which used to bring your famous gesture to life, has stifled your movements.  I can use only my right hand to move your head and mouth, and my voice to speak Shakespeare’s words as though with your voice.  What will happen to you if I lose the use of my right hand, too?  What will happen to you when the palsy robs me of speech?  

                                         (He stares into the face of the puppet Garrick on his right hand, whose puppet body hangs limply.)

Alas, poor Davy!  “Where be your gibes now?  Your gambols?  Your songs?  Your flashes of merriment that were wont to set the table on a roar?”  When my palsied hands can no longer animate you, you’ll be dead and buried.  Like the real David Garrick.  Like poor Yorick.

                                         (He looks deep into the eyes of the Garrick puppet. Suddenly, the Garrick puppet talks back to him.)

THE PUPPET

Oh, no I won’t.

                                         (The Puppeteer is surprised - even though it is the Puppeteer who is providing the puppet’s voice.)

THE PUPPETEER

You won’t?

THE PUPPET

Certainly not.  And you of all people know that.

THE PUPPETEER

Know what?

THE PUPPET

That I won’t be dead and buried.  I’m a puppet, not a person.  When you hang me back on the rack, I’m not broken.  I still work, if a puppeteer works me.  It’s just like that disease your Dr. Parkinson says he discovered - what did he call it?  The shaking palsy?  Dr. Parkinson doesn’t at all understand how it works.  You do.  Indeed, you understand how it works much better than Dr. Parkinson does.

THE PUPPETEER

I do?

THE PUPPET

Of course you do.  You’re a puppeteer.  You know how to make things, and you know how to make things move.  Dr. Parkinson thinks that the machine isn’t working properly, like a wheel stuck in the mud, or wobbling off its axle.  But that’s not what is happening.

THE PUPPETEER

What is happening, then?

THE PUPPET

Look at me.  I’m a puppet.  A puppet never moves without a puppeteer making it move.  The same thing is true of your body.

THE PUPPETEER

Are you saying that I’m a puppet?

THE PUPPET

No; but you are a machine.  Your machine still works.  And, more significantly, you still have an imagination, a spirit, a soul - the Ghost is still in your Machine.

THE PUPPETEER

Ah, the Ghost in the Machine.

THE PUPPET

Yes.  You’ve read your Descartes.  You know that the body is a machine, an intricate network of pneumatic and hydraulic tubes, like a bowl-full of macaroni.  You know that the imagination - what the French call l’Âme, the soul, and what the German calls die Geist, the ghost - pumps the animal spirits though the tubes to animate the machine that is our body.  That moment when my hair stood on end when, as Hamlet, I saw my father’s ghost?  My old wigmaker at Drury Lane, Mr. Perkins, showed you the special wig he had made for me.  You know that I was secretly squeezing a rubber bulb that pumped air through a tube running up my sleeve.

THE PUPPETEER

Yes, the wig.  It was just a trick.

THE PUPPET

Trick or no trick, it was real.  You know your Descartes, so you know why.

THE PUPPETEER

Do I?

THE PUPPET

Of course you do!  It was real because the trick wig was no more nor less a machine than is the human body:  the bulb that pumps air though the tube, making the hairs of my wig stand on end, is no different than the imagination sending the animal spirits pumping through the body, making the body move and the face and limbs give expression to the passions.  You may not have had the skill to make your own body expressive, so you didn’t succeed when you tried to become an actor like your idol, David Garrick.  But you learned instead to use your imagination to bring puppets - puppets like me, your own puppet version of David Garrick - to life.  You’re a puppeteer, a master puppeteer, The Master Puppeteer.  You, more than anyone else, know what makes the body move.

THE PUPPETEER

Then why doesn’t my own body work properly?

THE PUPPET

The problem in your body isn’t with the Ghost or with the Machine but with the tubes that connect them.  Your animal spirits used to sluice through the tubes in your body into your hands, like the air squeezing through the rubber tubes into the wig.  But now the tubes in your body are leaky, or clogged, or severed.  Your brain, your artist’s soul, tells your left hand to move, but your left hand is not getting the message.  Perhaps someday the doctors will figure out why the messages aren’t arriving and find ways of unclogging the tubes.  But first they will have to learn what you already know: the Machine still works; the Ghost still walks; only the Ghost can no longer animate the Machine.

THE PUPPETEER

How do you know all that?

THE PUPPET

I don’t know it.  I don’t know anything.  I’m just a puppet.  I don’t know anything that the puppeteer who animates me doesn’t know.  You know all this already; you just don’t know that you know it.  You discover that you already know something when you perform it - when you animate puppets like me.

THE PUPPETEER

                                         (In despair.)

That’s the problem:  I need to perform to learn - now more than ever, because there is still so much I need to learn if I am to cope with my disease.  But I can’t perform if my disease prevents me from operating my puppets.

THE PUPPET

Yes.  That’s your problem in a nutshell.

THE PUPPETEER

I don’t even know what to perform anymore.  I’ve made my career performing scenes from Shakespeare.  But the only Shakespeare that speaks to me now is the seventh age that he speaks of in “The Seven Ages of Man”:

                  Last scene of all,

      That ends this strange eventful history,

      Is second childishness and mere oblivion,

      Sans teeth, sans eyes, sans taste, sans everything.

For the first time in my life I feel that England’s national bard has failed me.  All my life, anything I wanted to express I knew I could find in Shakespeare.  Now the only thing he can offer me is a reminder of my own physical degeneration.  

                                         (With great difficulty, he picks up a puppet version of himself and holds it up with his left hand.)

Look at this puppet:

                                         (We can see the Puppeteer’s slight tremor through the puppet’s movements.)

I cannot bring it to life.  My body is not letting my animal spirits flow into my left hand enough for me to be able to control this puppet.

                                         (Showing the puppet-Puppeteer held by his left hand to the David Garrick puppet on his right hand.)

Look at him.  He can barely move.  All he does is shake, as though he were shivering in the cold.  This is what happens when the Ghost can no longer exert any control over the Machine it inhabits.  This puppet is me.  This is what I will become.

THE PUPPET

Possibly so.

THE PUPPETEER

If so, what will happen to my career, to my art ... to me?  There is so much I need to learn.  How am I to learn it all?

THE PUPPET

Well, then. Take a moment and think. What is the most important thing you still need to learn? If you could learn just one thing, do you know what that one thing would be?

THE PUPPETEER

                                         (Surprising himself that he can answer the puppet’s question without a moment’s hesitation.)

Yes, I do.

THE PUPPET

Tell me.

THE PUPPETEER

I would want to know this:

                                         (With gravity.)

What do you do, as an artist, when you discover that, in time, perhaps very soon, you will no longer be able to make your art?

THE PUPPET

The answer is simple.  First, you must make art about making art.

THE PUPPETEER

I know that part.  I’ve been doing it.

THE PUPPET

I am the evidence that you have.  But then –

THE PUPPETEER

Then?

THE PUPPET

Then you must - while you still can - make art about not being able to make your art.

THE PUPPETEER

                                         (Taking it in.)

Yes.  I must do that.  While I still can.

THE PUPPET

While you still can.

                                         (The Puppeteer is about to take off the David Garrick puppet but stops himself.)

THE PUPPETEER

Oh:  may I tell you something I’ve always wanted to tell you?  You are an extraordinary actor, Mr. Garrick.  Your performances changed my life.

THE PUPPET

Thank you.  But I’m not really David Garrick, you know.  I’m just a puppet.

THE PUPPETEER

Yes.  I know.  But I can believe that you are David Garrick himself because I can imagine you so fully.

THE PUPPET

Then you are an actor.  You have been all along.

THE PUPPETEER

                                         (Genuinely touched.)

Thank you.

                                         (With some difficulty, he takes the puppet off of his right hand and sets it back in its place.)

END OF PLAY

ACKNOWLEDGEMENTS

This play, and the full-length play from which it is adapted, were in part inspired by the article, “Garrick, the Ghost and the Machine,” by Joseph R. Roach, and his subsequent book, The Player's Passion: Studies in the Science of Acting.

Initial workshops for the full-length play were supported by a Research Opportunity Grant from the School of Arts and Sciences of the University of Pennsylvania (special thanks to David O’Connor, Peter DeLaurier, and Leila Ghaznavi); professional workshops and a public reading were supported by a grant from The Sachs Program for Arts Innovation (special thanks to Edward Sobel, Peter DeLaurier, Sara Outing, David Ingram, and Ross Beschler). 

For information about the full-length play, see https://carymazerplaywright.com/plays-2/a-puppeteer-with-the-palsy/ and https://newplayexchange.org/

Direct all inquiries about performance rights to the playwright.

Bios

Hal Sirowitz is an internationally known poet and the author of five books of poetry, Mother Said, My Therapist Said, Father Said, Before, During & After, and Stray Cat Blues. The former Poet Laureate of Queens, his work has been translated into fourteen languages. He is a co-creator of the Parkinson’s Poetry Project.

Minter Krotzer's prose has been published in many literary magazines and anthologies, including Before and After: Stories from New York; Louisiana in Words; and Hint Fiction: An Anthology of Twenty-Five Words or Fewer. She has received creative writing fellowships at the New School, where she received an MFA in Creative Nonfiction; Bennington College; the Virginia Center for the Creative Arts; the Squaw Valley Writers Conference; Ragdale; and the Moulin à Nef in France. She is a co-creator of the Parkinson’s Poetry Project.

Janyce Stefan-Cole is the author of two novels, Hollywood Boulevard (Unbridled Books) and The Detective’s Garden (Unbridled Books). Her work is included in: The Broadkill Review, The Laurel Review, The Open Space. "Conversation with a Tree." She won Knock Literary Magazine’s Eco-litprize and was republished in Being Human (Editions Bibliotekos). Also, Fiction Writers Review, Pank, The Healing Muse, Main Street Rag, American Book Review, WG News + Arts, and Dick for a Day (Villard Books).

Gerard Sarnat won San Francisco Poetry’s 2020 Contest, the Poetry in the Arts First Place Award plus the Dorfman Prize and has been nominated for handfuls of 2021 and previous Pushcarts plus Best of the Net Awards. Gerry is widely published including in The North Meridian Review, Buddhist Poetry Review, Gargoyle, Blue Minaret, Main Street Rag, New Delta Review, Northampton Review, New Haven Poetry Institute, Newark Public Library, Texas Review, Vonnegut Journal, Brooklyn Review, San Francisco Magazine, Monterey Poetry Review, The Los Angeles Review, New York Times, London Reader and Review Berlin as well as by Harvard, Stanford, Dartmouth, Penn, Chicago and Columbia presses. He’s authored the collections Homeless Chronicles (2010), Disputes (2012), 17s (2014), Melting the Ice King (2016). Gerry is a physician who’s built and staffed clinics for the marginalized as well as a Stanford professor and healthcare CEO. Currently he is devoting energy/ resources to protect democracy plus deal with climate justice and serves on Climate Action Now’s board. Gerry’s been married since 1969 with three kids plus six grandsons and is looking forward to future granddaughters.

Ann Mintz has had seven careers: studio engineer, archaeologist, public radio producer, archivist, museum professional, community development and fundraiser. She has lived in seven cities if you count Philadelphia twice. She lives and writes in Philadelphia with her husband, three rescued dogs and three rescued cats.

Maria Mazziotti Gillan, American Book Award recipient for All That Lies Between Us (Guernica Editions) and author of twenty-four books, founded the Poetry Center in Paterson, NJ, is editor of the Paterson Literary Review and is Professor Emerita of English and creative writing at Binghamton University- SUNY. Her newest poetry collection is When the Stars Were Still Visible (Stephen F. Austin University Press, 2021). Other recent publications include What Blooms in Winter (NYQ 2016) and the poetry and photography collaboration with Mark Hillringhouse, Paterson Light and Shadow (Serving House Books, 2017).

In his day job, Cary Mazer is Professor of Theatre Arts and English at the University of Pennsylvania, where he has been involved in the undergraduate Theatre Arts major for decades. He has directed plays at Penn, worked as a free-lance professional dramaturg, and was theatre critic for The Philadelphia City Paper for fourteen years. As a scholar, he has written books and articles on Victorian and Edwardian Theatre, Shakespeare Performance History, Modern Drama, and Dramaturgy. He started writing plays in 2012, two and a half years before (but, given the changes in brain chemistry, possibly not unrelated to) his Parkinson’s Disease diagnosis.  His second play (of 13), Shylocks Beard, won the Award for Excellence in Playwriting from the Association for Theatre in Higher Education. A Puppeteer with the Palsy Apologizes to his Puppet is adapted from his full-length play, A Puppeteer with the Palsy Performs Scenes from Shakespeare, or, The Ghost in the Machine.

Deborah Fries is a writer, editor and printmaker who works in multiple genres. She is the author of three books of poetry: Various Modes of Departure and The Bright Field of Everything, both published by Kore Press, and Having Visions Again, the 2021 Keystone Chapbook selection from Seven Kitchens Press. She has taught multi-genre narrative medicine courses to both health care providers and patients and published numerous articles about living with a genetic risk for Alzheimer’s.

Sean Denmark lives in Atlanta, where he teaches adult immigrants English. His poem is from a longer manuscript of poetry written while walking the Camino de Santiago pilgrimage trail in Spain. More of his writings can be found at www.seandenmark.com.

Dorothy Friedman August is a widely published award winning poet who has published 3 books of poetry, including Family Album and The LIberty Years. Two books are forthcoming, L Shaped Room (Poets Wear Prada) and Drinking Alaska. Her work has been published in numerous magazines and anthologies, including The Partisan Review, The California Quarterly, Hanging Loose and Orbis. Recent poems have appeared in TRIBES, Home Planet News, Sensitive Skin, Brownstone Poets, and others. She has won two New York Foundation of the Arts fellowships and co-edited The Helen Review with Carol Polcovar. Continuing her career as poetry editor she was poetry editor of Downtown for ten years and co-edited Downtown Poets, an anthology. Presently she edits White Rabbit, a zine, most recent issue dedicated to John Ashbery, who she studied with at Brooklyn College, and Colette Inez. Upcoming issues will include tributes to Steve Cannon and Steve Dalachinsky, and Allen Ginsberg. She teaches American Literature and Poetry at Empire State College and is working on a memoir.

Betty Pollack Shapiro’s artistic endeavors and creativity have increased dramatically with the onset of Parkinson’s Disease. Betty’s art work has been commissioned, and she has had a solo art show. Betty is currently using drawing as a healing mechanism. Betty was the female featured in Peter Barton’s short documentary, Parkinson’s Third Wind, which may be seen on https://mediflix.tv. This is Betty’s first written publication.

Parkinson’s Poetry website and magazine is made possible by the New York State Council on the Arts with the support of the NY Governor and the New York State Legislature.