~This essay previously appeared in WordWrights! (2001).
Melodious,
rhythmic, two words trip off the tongue with a dancer’s grace, four syllables
each, each with a long vowel sound sandwiched between short vowels and a
percussive shimmer of consonants: Ankylosing Spondylitis
Ankylosis is a disease process in
which joints become rigid. A spondee is a type of metrical foot in poetry – two
heavy stressed downbeats. I’m taking some poetic license, since the: “spondyl”
in the disease name refers to the spine, but it’s close enough for me.
“Itis” is inflammation. About 25
years ago a friend maneuvering through the crush of people at a crowded party
brushed against me, then nearly jumped back. He said heat was radiating from my
neck. It was the “itis” in ankylosing spondylitis -- the flame in inflammation,
the heat in the fire. A piece of a word
came to life.
So: “Heavily stressed poetic units
growing inflamed, becoming rigid.” It
almost sounds like some rare breed of erotic poetry.
Much jazzier than the generic
“arthritis,” as in “minor pain of arthritis.” That old phrase evokes a world of
advertisements featuring bored actresses whose mildly troubled expressions
barely hide the smiles that will shine when a couple of over-the-counter pills
make everything all right.
In in my early teens, walking in
Sligo Creek Park, when a bee stings me on the hand. The year is 1967, or maybe
’68. A sudden inspiration accompanies the throb that follows the initial
electrifying shock. It’s a thought so far outside my ordinary train of thinking
that it nearly turns my mind inside out.
Paraphrased, it goes like this:
“Don’t label this experience as ‘painful’ or ‘bad.’ Just observe what you feel
and see what happens.”
I focus on a pulse, intensity
increasing and decreasing in wave-like patterns. The rhythm of that throbbing
becomes musical, like the drone of a tambura which sounds in the background of
Indian classical music.
The play of my thoughts is a melodic
improvisation rising from that pulse; the bee sting grows into a gorgeous
concert playing in my hand. Freed from the straitjacket of language, the
experience becomes so enjoyable I almost miss the pain when it finally begins
to subside. I don’t understand exactly what has happened, but know it’s
important.
We get clues in our lives, a sort of
fragmented roadmap of what’s to come, if we can only read the signs. In the
winter of 2001, recuperating from my fourth hip replacement, I recalled the bee
sting, that fascination with pain. What is it? How do we deal with it?
The arthritis came in 1973, first
in the back and neck, during final exams at the end of my freshman year in
college. The vast majority of people with ankylosing spondylitis are men; the disease
often first appears in the late teens or twenties. I was eighteen years old.
Doctors made their diagnosis just over a year later when the disease spread to
my left hip.
As the pain in my hip gradually
intensified I grew more closely attuned to the earth, the minutely detailed
rise and fall of land. If I stepped on a twig, acorn or pebble and my foot
rolled a half inch the sensation was like knives stabbing bone. My feet became
almost as sensitive as hands; they gripped the earth even through my shoes.
In 1976 both hips were
replaced. I would have gone crazy without the operations. Simple walking took
such concentration it forced me into a sort of covenant born in pain. I tested
the ground, wanting to trust it, learning how. I walked with a cane from 1974
until 1997. Now I use crutches.
After the first two hip replacement
operations, I received morphine by injection for several days. Most evenings
I’d lie in bed, talking to a friend on the telephone. A nurse would enter and
ask if I wanted morphine. Would I like morphine? Is the Pope Catholic? I’d
explain the situation to my friend, put the phone down, get the shot, pick up
the phone and resume the conversation.
Up till this point, we’d been having
a fairly typical sort of conversation, a friendly see-saw, 50/50. I say
something, they say something, I say something back. A few minutes after the
shot, I’m not saying so much. Maybe we’re going 80/20. A minute or two later my
friend suddenly realizes that he or she is delivering a monologue into a silent
telephone.
There’s a pause, a stretch of
silence, and then somewhere somebody is saying something like: “Oh, maybe I
should go now.” I’ve become a very tiny man deep in the center of my skull. My
skull is very big, an entire universe. There’s a telephone at the end of the
universe. I hear the distant voice, and, making a supreme effort of will, say
“yes,” then plunk the receiver down.
For seven years after the hip
replacements life was a breeze, with constant pain, usually so mild it became a
vague background music. Walking was no longer frightening, so my feet became
casual, laid back. I gradually forgot how intensely I had lived every day. That
changed in the spring of 1983.
Flare-ups are quite rare – I’ve only
had three or four – but for a week or two they turn the world upside down.
Having a chronic, unpredictable disease is like living in a cage with a tiger.
He attacked years ago, and I’ll probably hurt from those encounters for the
rest of my life. The tiger sleeps for years at a stretch, but sometimes he
wakes up. When the tiger attacks, that’s a flare-up.
I’m working in downtown Washington,
D.C., at 20th and M Street, on a Friday in April, 1983. Late in the
afternoon a mild feverish feeling comes over me; it isn’t like flu, isn’t like
any bug I’ve ever known. As the workday ends and I begin the four-block walk to
the Farragut West metro station, the vague fever suddenly changes. It’s
arthritis pain. At 20th and L I realize I’ll never be able to reach
the subway. At K Street I try to get a cab to my apartment in Arlington. I move
in slow motion, as if in a cocoon of pain. My body won’t respond to my
thoughts. It’s rush hour, so there are plenty of cabs, but I can’t move fast
enough to hail them. This would be scary, but suddenly a part of me breaks off
from the whole crazy scene and becomes a very calm observer. It’s like he’s in
an auditorium, in a front row seat, watching a mind disintegrate under the
sheer intensity of pain. Fascinated, and utterly tranquil, I watch the
disintegration for a moment, then realize I probably should do something.
There’s a pay phone a few steps
away. I can barely move, but I can wait, so I call Red Top, prop myself against
a wall, and return to that auditorium to take in the scene until the cab
arrives.
The next morning the arthritis is in
both elbows, knees, shoulders, wrists, and ankles. I can lift a fork with my
right hand, but can’t get it near my mouth. For two weeks I eat and shave with
my left hand. Gradually life returns to normal, a constant, background hum of
fairly mild pain.
One of the scariest moments of my
life took place a year before that flare-up, in my mid-twenties at the edge of
lake in the Scottish highlands. Tom, his wife Ann (my father’s cousin), their
daughter Betty and I were traveling through Ireland and Britain. Tom, probably
in his fifties at the time, was born club footed. One afternoon when we were
alone in the car he briefly winced with pain. I asked, “It’s not like it hurts
any worse than before – is it just that the sheer accumulation of decades of
pain finally begins to wear you down?”
I didn’t realize it until the words
were out: I was asking him about my future. He paused a moment, then just said,
“yes.” A soft mist covered the mountains like drifting minor chords, a sad air
I could almost hear, all the pain and sorrow across the centuries in these
blood drenched valleys and glens. A slow dread attached to that music as we
rode the winding road curving up and away from the lakeside into distant hills.
It’s not all misery. Often there are
extremely pleasurable electric buzzes sometimes in the neck, sometimes the
spine. Rheumatologists tell me these experiences are described in the medical
literature. As the disease progresses and the spine fuses, some people report
shooting pains, others are more fortunate.
I fell in love with avant garde jazz
three years before the arthritis struck. Pianist Cecil Taylor and musicians
crazy and brilliant enough to storm the heavens with him. Ornette Coleman,
whose early New York appearances were
described by critics as music that sounds like the end of civilization. John Coltrane and Pharoah Sanders honking
tenor saxes – huge melodies that melt down into extended sessions of sheer
shrieking – over ensembles propelled by multiple drummers. Coltrane’s later
recordings make rap sound like easy listening. Reasonable people could say this
music goes beyond mere dissonance; it’s downright painful. To me it was the
sound of ecstacy.
Those recordings have an almost
molten quality. Beautiful music grown out of an angry world; it’s as if they’re
yearning to create a fire that consumes everything. A few years ago I was
astonished by a sequence of African women wailing loudly in Bernardo
Bertolucci’s movie adaptation of Paul Bowles’ The Sheltering Sky. The eerie, highly stylized (to my Western ears)
voices of anger and grief sounded uncannily close to the textures on Coltrane’s
Meditations album.
My experiences with Coltrane,
transforming furiously dissonant music into ecstatic sound, may have been a
sort of inner preparation for the
illness which was to come.
In the spring of 1994 I’m enjoying
an outdoor Greek festival with a friend who has severe arthritis. I’m just getting over my first flare-up since
the 1983 adventures. It’s a beautiful blue sky afternoon. We’re eating
souvlaki, drinking Greek beer, anticipating the honey and walnut of baklava. An
ensemble of musicians is starting to set up under a tent, tentative plinks and
strums of balalaika a perfect soundtrack as we approach the dreamy cusp of
evening.
We recount old misfortunes,
laughing. “After the Revolution,” I say,
“we’ll kill all the old ladies in those damn aspirin ads.” She thinks a moment,
then edits my revolutionary justice. “They’re just actors. We’ll kill the guys
at the advertising agency who came up with the ads.”
By the flare-up of 1997 I’m starting
to feel the accumulation of those decades predicted long ago in the Scottish
highlands. If my left foot rises above the ground even a half-inch it feels
like my leg is hanging over a precipice. There’s a two-ton weight hanging in
that open space tied to my foot, and it’s ripping my leg off my body at the
hip.
To walk I use crutches, press my
left toe to the floor and drag my foot forward about a half-inch. I do that
three or four times, very slowly. Then I raise my right foot and move forward a
bit, lean harder on my crutches, and push my left toe into the floor and drag.
Life simplifies.
Weeks later, I walk slowly on
crutches through downtown Bethesda, thrilled to just sit outdoors with a cup of
coffee. Months after that I’m still on crutches. The usual recovery process
after an arthritis flare-up seems to have ended prematurely, so I ask the
rheumatologist if perhaps we should take an X-ray. He agrees.
When the X-ray is finally made we
learn that my artificial prosthesis is broken, and the hip is out of the
socket. The left hip, replaced in 1976, is re-replaced.
One afternoon, just a year or two
after the arthritis struck, a group of students gathered in a room a few
minutes before a class started at the University of Maryland. One young man
laughed and complained about his wobbly chair. “A room full of chairs in here,
and I pick the one cripple!” Just as the words were out of his mouth he saw my
cane. He apologized profusely, but I just laughed and told him I wasn’t
offended.
“Political Correctness” wasn’t yet
the crippling force it would become; he meant no harm. After the incident,
though, I was intrigued. I’d been walking with a cane for several months by
then, but had never realized that people perceived me as “handicapped.”
Perceptions and misperceptions took
other shapes years later when I was in a poetry critiquing group. Five or six
of us met every other Saturday morning at an apartment just off New Hampshire
Avenue. The neighborhood straddled multiple borderlines, with the feel of Adams
Morgan, Dupont Circle, Mount Pleasant, and a combination of all three.
Early in the afternoon I’d walk back
to the Dupont Circle subway station, gliding on a high fueled part by black
coffee, part by the energy that happens when a group of poets take their pens
to fresh drafts.
One gorgeous day in the late 1980’s,
a smile big on my face as my cane and I walked down New Hampshire Avenue –
perhaps to lunch, perhaps to a meandering improvised meandering wander that
might end up in Georgetown, or perhaps straight to the subway – I passed a
young woman. She looked stunned, then she gave me a huge smile. It was a
jarring moment, much too intimate, as if she hoped to generate all the good
will in her life and direct it my way.
She looked too cosmopolitan, too
hip, to be of the old Jerry Lewis school of relations with the handicapped. (Oh, that poor, miserable soul, let me smile
upon him and hope to make his burden a little lighter.)
A half block after we’d crossed
paths I suddenly realized what she must have seen. In the late 1980s, a young
man with a cane walking toward Dupont Circle could have only meant one thing:
She had seen a man dying of AIDS. In silence – the moment passing so quickly
there was no time for words – she wished him well.
After seeing that woman’s expression
a few more times in that neighborhood, I began to come to terms with a weird
artificial poignance that had woven itself around me like an electric force
field. The good will coming my way was genuine, but the facts were all wrong.
You can’t very well walk down the street saying, “No, that’s ok, I’m not
dying,” to every stranger who smiles or offers a few words of kindness. In the
end, people will perceive what they will; their misplaced kindness was real
enough.
One weekend afternoon a year later I
waited at a Dupont Circle bus stop for the Metrobus to Georgetown. A man
approached with a crazy glint in his eyes. He might have been on PCP. As he
turned toward me and stepped in close, the crowd at the bus stop backed away to
form a semicircle.
“You son of a bitch,” he said,
“You’re not dead yet.” I stood, waiting for whatever might come. Full of hate,
he stared at me one long moment, then turned and walked away.
I don’t like the whininess of that
last paragraph; wish I knew how to say it without the forced appeal to emotion,
the invitation for sympathy. A dyslexic friend bristles when people with
learning disorders take advantage of their disadvantages. I despise the
handicapped golfers I’ve heard of who press, with the threat of legal action,
for unfair advantages. The fuzzy, wishful-thinking language of “empowerment” be
damned: There are some things some people can not do. I would not board a
Metrobus if the driver had a seeing eye dog.
Enough. The soapbox grows annoying
when ordinary life is so good. A few years ago I bumped into an old friend at a
poetry reading. She had had disastrous health problems, nearly died, and was
just getting out for the first time. After the reading we wandered off to an
impromptu dinner. It was like being with a newborn child who has the speech of
an adult.
“Sunil, look at the light on the
tree; look at the shadow. Sunil, isn’t this a great breeze? Listen to that
siren.”
When we reached the restaurant she
just held the open menu, running her fingers along the surface, taking in the
tactile pleasure before daring to look at all her options. We were silent a
long moment, just breathing, eyes wide. The ordinary sounds of a crowded
restaurant washed over us, a full house of happy people who had no idea how
happy they really were.
When she began to read, I heard
another text beneath her new-found liturgy of cilantro, of grilled salmon,
potatoes, of dill and mushrooms and cheese in omelettes, and dark red Merlot.
Before the drinks appeared, before
the appetizers, I feasted on the wonder in the voice that held those syllables
so close. Cilantro, she said. Mushrooms. Merlot. I give in to the sheer
praise of it all.
*****
THE STORY BEHIND
THE ESSAY
This essay takes its direction from the old advice to “write what
you know.” I found myself thinking a lot
about my arthritis in 2001, the year of my fourth hip replacement. I wanted to
record some thoughts and observations that might otherwise have evaporated had
they not found their way into an essay. These included thoughts about music and
the body, personal responses to misperceptions, and other loosely-related observations. Although in many ways I wrote this for
myself, I imagine the writing process was strengthened – perhaps made more
serious and disciplined -- by knowing that it might ultimately find an
audience. Thanks go to William O’Sullivan, Phillip Lopate, and workshop
participants who gave feedback at The Writer’s Center; to WordWrights publisher Ron Baker, who first gave it a home in print,
and of course to Redux for giving it
a second life online.
*****
ABOUT
SUNIL FREEMAN
Sunil Freeman is author of two poetry collections, That Would Explain the Violinist (Gut
Punch Press, 1993) and a chapbook, Surreal
Freedom Blues (Argonne Hotel Press, 1999). He has received an individual
artist grant in poetry from the Maryland State Arts Council. His work has
appeared in print journals, anthologies, and online, including Gargoyle, The Delaware Poetry Review,
Beltway, Minimus, Bogg, The Delmarva Review, Kiss The Sky: Poetry and Fiction
Starring Jimi Hendrix, Cabin Fever:
Poets at Joaquin Miller’s Cabin, and the Library of Congress podcast of The
Poet and the Poem.
Who knows how another person experiences love or hate or pain. Thank you, Sunil, for expressing how your pain operates over the long haul. i can't say I can't imagine. This essay helps brings me to where you are.
ReplyDeleteHow can you know how another person experiences love or hate or pain. Thank you, Sunil, for helping me imagine what pain is like over the long haul. And how it is for you.
ReplyDeleteGreat essay! I loved the parts about Cecil Taylor and the folks in Dupont Circle who mistakenly thought you had AIDS in particular. And of course the ending, the "sheer praise of it all."
ReplyDelete