~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.