My playmate said: “You were burned.”
Was I? I wondered.
3.
Loneliness shrouds this child;
she can’t beat it back.
It shades her from the moment she enters
her mother’s glittering party
in her best blue dress,
scratching her arm.
4.
In my dream, Mother and I share
red wine in a plush room, while
a half-naked child shivers on a hillside,
her buttocks sluiced with rain like a gelatin print.
I watch her crawl into a hole,
thinking at least she has red wine in her,
the memory of something warm.
5.
On a business trip to the flaming South,
I heard my client ask:
“Will you meet my daughter? She too has ichthyosis.
She’s thirteen, plays alto sax, likes
Mexican food.”
An hour later, I reached past her parent’s love, past
the beaches of our thickened skin
and furtive glances at each other’s legs,
to clasp and stroke her grosgrain hand.
Accoutrements
1.
Commissioned, I brought my mother’s
perfume back from France,
Guerlain Mitsuko, in a
brown Art Deco box.
“Do you know this scent?” She knew
I did.
“Dad loved it.”
In sweater drawers,
negligees, the back
of her neck.
2.
She knelt with cotton gloves
to fit the first sheer stockings
on my shrinking legs
where my jagged skin
threatened the silk.
3.
A snakeskin mirror
peacock blue,
I bought in Paris lately,
ornaments my hand,
like womanhood smoothed out.
4.
In the deep porcelain bath,
bands of skin tighten my thighs.
Skin shards rear,
torn again and again,
always for the last time,
other scales mottle like peacock eyes.
5.
Tonight I pump
breeze through a Spanish fan
with boxwood scent.
I cool my face before
the fire of strangers, hiding
behind the dancer’s fan,
her shock of black
hair, her yellow boot.
The Examining Table
1.
My skin cracks like scorched earth.
A rash beneath my breasts shames me.
I hide in bed. I hide in the sun.
2.
In my dream, a woman juts scarred arms,
like fissured wood, towards me.
I stroke her burnt-red hair,
her head an African goddess,
my hands wet, electric.
“Feel my arms,” she says, “feel them.”
I cannot finger the ridges where
knife, lash, electrodes
slashed her arms.
“Touch my wounds,” she says.
I cannot move my moist hands off her head
to stroke her skin and cling there.
3.
Yet, in the hospital parking lot,
my heart jumps in my throat
as I walk to the annual meeting
of the Philadelphia Dermatological Society.
In the examining room,
I’m Case #18: ichthyosis.
“You’re the star of Philly Derm,” the resident says—
“the only full-body case.”
Even the lepers show only extremities.
The kindly doctors
gather round, thumbing
their casebooks,
asking: “when did your condition start?”
Like Susanna with the elders,
I tell my story,
swinging my legs against the metal table.
In childhood, standing in Dr. Shelley’s office,
I stretched my arms to his soft, scientific gaze.
My body came along with me who looked and saw and did not see.
But now, on this day,
I sit on the edge of the examining table, nakedly me.
The ridges of my skin stick
to my arms and I am one with them.
I sit whole on the table edge, Case #18.
4.
I have broken the old taboo,
named my affliction,
called it mine.
5.
In the Inner Harbor,
walking by the water,
I flirt like a girl
with a strange guy eating a baloney sandwich.
“Sit here by me,” he says.
He names the tugboats, wharves, the water taxi.
And so we sit,
looking out to open sea.
Hal Sirowitz
ZOMBIES ARE LOOSE
Having Parkinson’s in a marriage is equivalent to the old Hollywood B 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 walking away in my 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 a blurring of the usual sensations, and then new ones, like genuine hallucinations, not inspired by LSD or any other hallucinogen. I used to see people in cars. But when I got closer, I’d see it was just the head seat. Those hallucinations kept me from being lonely, because as soon as I discovered one person was just a mirage, the next car seemed occupied. It’d go on like that until I’d come across a real couple in their car seats smooching. I’d quickly look away before I was caught spying. As a Parkinson’s zombie, you don’t lust for someone’s blood like the typical Hollywood version of a zombie; you just 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 looks like? It looks no different than the faces of exiles. Their pain at 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 home, inside their communities again. Whereas the Parkinson’s patient looks as though he’s losing his body. It’s not unlike a mask by Picasso (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 maybe 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 collisio
n 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 Groucho 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 an 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.
A Step above Cows
I read somewhere that a cow
can only walk up stairs but
not down. Even though I have
Parkinson’s, I’m a step ahead
of a cow. I can walk up or down
without much trouble. And the
one time I fell, I was walking up
but lost my balance and fell down,
which proves that I’m not
a cow, because for a split second,
I had the choice of where to fall—
up or down—and unceremoniously
took the down route, because it
takes you faster to where you
want to go—at the beginning
of the stairs, so I could do it right this time.
Legal Drugs
No one knows how you get Parkinson’s.
It could have been from the Thorazine I took
my last year in college when I was depressed
about the possibility of being drafted to fight
in the Vietnam War. Taking the Thorazine
was like hitting yourself on the head
with a hammer and the reflexive result
was it’d drag you to sleep no matter how
wired up you were. I gave some
to my druggie friends when we met up
at Washington DC to protest the invasion
of Cambodia. They said Thorazine was
a chaser, like taking a shot of tequila
after gulping down a pint of beer. It calmed
them down when they went cold turkey. They
couldn’t believe I was getting Thorazine
for free when they had to pay street prices.
A Famous Ball Player
When I was first diagnosed with Parkinson’s
I was happy my symptoms—limping,
trembling—had a name. Who’d
want to suffer from a nameless disease?
At least if one had Lou Gehrig Disease,
one could identify with the great Yankee
first baseman. Sir Parkinson excavated
dinosaur bones, then assembled them.
Not that I’d want to trade my disease
for Gehrig’s, but at this point in my life I’d
rather have a ball thrown to me—
at least I’ve caught balls before—than
have to deal with an extinct species.
The subject of extinction is too close to home.
Avoiding Rigidity
“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.”
Lisa Gill
MAPPING CAESURA: THE ENCOMPASSING BODY
On the median in the stretch of Route 66 that runs through Moriarty, New Mexico, a cardboard sign read Craft and Gun Show. I couldn’t help thinking that was a fair assessment of gender roles in Torrance County. Add a Christian cross, a rodeo belt buckle, a big rig and a tractor and you would sum up my expectations of the entire community where I chose to make my residence.
For eight years I lived in a house fourteen miles from the crossroads that constituted “town.” The structure abutted a ranch with 11,000 acres of piñon/juniper grasslands populated only by wildlife and a few cattle. As close as I ever got to knowing any of my “neighbors” was to exchange a book of my poetry for a tow after getting my car stuck in deep snow. The help came with a mandatory ninety-minute history of the valley. Loneliness was rampant in the region, though I tended to call it solitude and protect it.
Much of the community lived as I did, tucked down dirt roads in little enclaves of rural sprawl in various states of disrepair, with windmills spinning, tires on tin roofs and barns—or some type of outlying shacks—on the property. Sometimes I suspected that the preponderance of little decorative Christmas trees made from paper clips that I witnessed on the tables at El Comedor was just an incidental result of isolation and a median income of $13,000. Twenty percent of Torrance County’s population lives below the poverty line.
If I felt at odds with much of the political and religious slant of Moriarty, as an unemployed, disabled poet, I fit the economic demographic squarely—but cheap rent wasn’t what enticed me out there. I loved the land. My relationship to the environment, however, was almost as parasitic as the plump crimson cochineal feasting on the prickly pear: I needed nature.
I needed—for medical reasons—to be able to go for a walk between juniper and piñon, look down and spot white mold on a pad of cactus, kneel and peel the webbing gently back between spines to reveal the coveted species of small, oval insect that has been used to make blood-red dye for centuries.
Last century, in 1980, the American Psychiatric Association added a new diagnosis to the Diagnostic Manual of Mental Disorders. In 1990, while living in Albuquerque, I was given that diagnosis: post-traumatic stress disorder (PTSD). The disorder is a cluster of symptoms that happen as a result of severe traumas, like war, like rape. At twenty, I was given the diagnosis due to symptoms following a rape. When I was twenty-three, an attack by a lover exacerbated my illness and I gave up. I left the city. I was afraid and so I ran. I ran away from 521,000 people.
If I was literally afraid of stalkers and predators, I also found Albuquerque’s light and noise pollution taxing. One of the symptoms of PTSD is hypervigilance, a heightened intake and awareness of all sensory stimuli. My body was perpetually on alert, my mind overburdened with information. I needed solitude. I needed peace. I needed rest. I needed to be landlocked, carefully buffered from overstimulation, and then I could endure.
And I could write.
For seventeen years, five books and several manuscripts, I hunkered down at my typewriters or computers in various small structures in communities outside city limits: Carnuel, Cedar Crest, Alameda, ultimately settling in Moriarty. With or without power, with or without a paved road, near the Rio Grande, by an alfalfa field, beneath a steep rocky canyon, nestled in the piñon/juniper spreads at 6,500 feet, my symptoms subsided.
Or at least, I had a safe place to retreat to after commuting an hour for city interactions. I had a quiet place to collapse after rounds of insomnia. I
had a place to write—and I had poetry as a “place” to think.
My ink-based contemplations were nurtured by both distance from the city and proximity to a more visceral and sensible—or sense-making—environment. Resonance matters. What I found in the natural world was a mirror to what I knew. While manicured lawns and coiffed landscaping offer me only an unreliable façade to cling to, a rock bed in a natural arroyo practically coddles me. Even a coyote kill, sun bleached in a matter of hours, leaves me duly somber. And calm.
Honesty aids any relationship.
As does clarity.
In August of 2003, it was unclear what was happening to my body: my feet went numb after a long hike carrying a twenty-five-pound tree trunk back from the upper mesa. What began with a sensation of small metallic pins and needles in the bottoms of my feet became—within days—wooden, my legs fallen logs, dead lumber splayed on the bed (and in the hospital) waiting to be “cured.” Or seasoned.
Being diagnosed with multiple sclerosis (MS) can actually cause PTSD. Fear is off the charts. Lesions in the brain can—and do—wreak havoc on almost any neurological function. I lacked sensation, had tremors, grew weak, fell, suffered vertigo and became unable to read for three months. My cognitive function fluctuated. One night I cooked dinner for twenty-four hours and nearly burned the house down. And yet, still, I had nightmares and flashbacks. Past traumas vied for my attention with present traumas.
Given my new diagnosis, MS, doctors enrolled me into day programs for my previous diagnosis, PTSD. Their logic required that I control the stress of flashbacks and memory so as not to exacerbate the MS. The two diagnoses are twined together. My body and my mind are twined together. I am twined to the land. Everything is “comorbid.” Each environment sings with diagnoses.
From my bed, I looked out the window at cholla—blossoms and spines. I studied wildflowers while laid up. I researched medicinal herbs between sessions of physical therapy. I stared at a topographic map on the wall. I walked (just barely) out my front door, watched the sky and wrote poems. During the first year of disease, land was lust. Or land was love, unrequited. After a course of steroids, rounds of physical therapy and a full year, I was in remission.
Beauty Is a Verb Page 20
