“Miss Merritt has retired,” so the letter I received in the late ‘80s began. At the time, I was teaching at Jones County Junior College where my colleagues and I were enjoying Robert Fulghum’s bestseller, All I Really Need to Know I Learned in Kindergarten.
“I must have been a slow learner,” I told my coworkers. “I made it all the way to high school before I learned anything really useful.”
The news of Miss Merritt’s retirement only solidified my opinion. Phyllis Merritt directed the choral program at Escambia High School in Pensacola, Florida. As a singer in the auditioned group called the Rebelaires (later called the Escambians), I learned the simple axioms that transform ordinary experiences into life lessons.
Five days a week, choral groups numbering as few as thirty-five and as many as over one hundred gathered in one room, put aside cultural and political differences, and transcended personality clashes: you don’t have to like the people you work with in order to do a job well.
Her choral groups often sang pieces by such composers as Persichetti or Ives, whose notes sounded randomly selected, but were actually neatly arranged and organized on the printed score: what sounds like hopeless discord is often ordered harmony.
Her choice of choral literature often included texts in foreign languages and seemed composed on levels beyond traditional high school performance and understanding. We tackled Orff’s Carmina Burana, Schubert’s Mass in G, Berger’s Cantique de Jean Racineand learned to sing in German, Latin, Italian and French. My favorite was Faure’s Requiem, which we presented my freshman year. It was the very first large choral work I sang.
Miss Merritt booked First Presbyterian Church, one of the oldest churches in Pensacola. My only singing experiences had been in Baptist churches that usually have the choir facing the congregation at the front of the sanctuary. Although that arrangement allows for facial interaction between the singers and the hearers, the sound has to transverse all sorts of physical obstacles before filling the sanctuary. These Presbyterians hid their choir and organ in the balcony, a location that added to the ethereal natural acoustics of wood, glass and stone. Instead of the choir projecting the sound forward and up, the harmony wafted downward covering the audience like a mantle.
Of the movements, for me the Agnus Dei holds the most magic. It begins in pathos and pleading repetition then abruptly yields to measured silence, like drops of holy water beading on a thurible. Motionless, we singers strained to continue, but waited on the conductor to give us a sign. Miss Merritt inhaled then nodded to the sopranos and the dawn of sound began. Their unison so soft and pure it seemed more felt than heard, these female prophets prophesied a single, rounded word: lux. And then as more voices joined, the luxexpanded into lux aeterna, a single spinning sound so bright the very walls shone with the sound, until the single note burst like a lush ripe grape into chords that seemed refracted into infinity: luceat eis. At that moment, I knew I never wanted the music to end. Later, as I moved away from home and became the new singer in community choruses, those same skills and literatures became my passport to membership: to have music is to be everywhere at home.
Almost everybody wants to be the soloist, (and managing the teenaged prima dona requires an extra dose of patience), but only one person can be the star. I’ve watched many so-called friendships irreparably rupture during auditions. A choir, however, requires many people. I am a non-musical “soloist”— as an unmarried, orphaned only child—I eat, live, and sleep alone (unless two Chihuahuas count). When I am willing to blend with others, however, as a choral singer, I always perform.
Often at choral festivals, several different groups would perform the same selections. Those groups who sang the same songs or had to follow the performances of Miss Merritt’s groups usually suffered from the comparison. In 1974, while at the Florida Vocal Association at Florida State University, I made a last-minute stop at the ladies’ room. I had just closed the stall door when two directors entered. I never discovered their identities, but their conversation left no doubt about whom they spoke.
“This is the third year my advanced kids have had to follow her group. Who puts the order together? My kids think they sound good until Phyllis’ choir performs and then they lose their confidence and don’t want to go on stage,” said the first director. “Seriously. You’re on the festival board. Can’t you do something?” I peeked through the space between the door and the wall; she lit a cigarette and took a long drag before handing it to her companion. “My god they win every year. Couldn’t they just perform without being adjudicated?”
The second director exhaled and fanned the smoke. “What do you want me to do? Nobody wants to follow her.” She returned the cigarette.
“You could always draw numbers for performance positions,” my mouth said, while my brain chanted,“Oh, damn.”
After a long silence, one of them said, “That’s a good idea. Now, what choir do you direct?”
I sighed. “I don’t. I’m in one of Phyllis’ groups. In fact, I’m supposed to be in warm up right now.” I flushed the toilet. By the time I opened the door, they were gone.
When we reacted negatively to other groups that poorly performed “our” literature, Miss Merritt reprimanded our ridicule. If a singer didn’t get the hint, she made the singer sit out the performance or go home. After hearing the bathroom conversation, I understood her admonition: to be good, graciously.
If one of her choir’s pronunciation and enunciation sounded muddy, Miss Merritt stressed the importance of text. One memorable example concerns a choir director who, in malapropian fashion, confused “prostrate” with “prostate” and “calvary” with “cavalry.” An audience deserved the best of both pitch and text for complete meaning. Miss Merritt’s rule: if a song sounds harmoniously good but an audience can’t understand the lyrics, choose something else to sing.
Student body conduct and cultural disagreements in 1975 often diminished or canceled extra-curricular activities. Miss Merritt, however, believed that the rehearsal and the show should go on. One afternoon during class change, a fight broke out in the hall by the rehearsal room door. I watched, horrified, as a student swung a pocket knife and sliced Miss Merritt’s palm. Miss Merritt continued to get the singers into the choral hall and then she and another teacher bolted the door. Someone brought the first-aid kit, swabbed her hand with alcohol and an antibiotic cream then wrapped the wound. The rest of us absently sat on the risers.
“What do you think you are doing?” Miss Merritt said. She looked at us. “You’re not getting out of rehearsal that easy. Get your folders.” I know her hand must’ve hurt, but if she could make herself conduct, how could we not follow her lead and sing? In that incident, she modeled professional behavior: if others fail, don’t lower your own standards.
No one sings in a vacuum. The singer relies upon physics for harmony and pitch and acoustics, physiology for the mechanics of breathing and producing sound, mathematics for rhythm and beat, literature for text, linguistics for pronunciation and history for authentic performance: singing like the post-high school world we entered is interdisciplinary.
In 1973–75, the Rebelaires had the privilege of performing in memorable venues. When operatic bass Jerome Hines needed a back-up choir for his performance in Pensacola, we learned his music and shared his stage. Frank Sinatra, Jr. dropped by between gigs at the Municipal Auditorium. Much to the disappointment of other singers in town, The Rebelaires performed for President Gerald R. Ford and his entourage. The year had been not so pleasant for the President, who had only assumed office in August after the resignation of Richard Nixon. Our selections included “What a Difference a Day Makes,” “For All We Know,” and “Nobody Knows the Trouble I’ve Seen.” Even now, none of the singers is sure whether the irony was deliberate or circumstantial. The President seemed unfazed by our choices. He thanked us for our contribution and gave us each an autographed card. The signature may have been the work of an automated pen, but I have kept mine anyway.
In later years, Miss Merritt has added another axiom to the mix: music is the great unifier and the great healer. We alumni Rebelaires proved this truth. We joined alumni of her various other auditioned ensembles to persuade Miss Merritt to abandon retirement and take up her baton to conduct us again. Her high school singers had matured into dentists, cardiologists, university professors, IRS forensic accountants, military officers (including two brothers who served at the Pentagon during the 9/11 plane crash), scientists, engineers, firemen, public servants, CPAs, teachers, graphic designers, and even some who became professional musicians. To our great good fortune, she said yes. This time we had no school mandated venue, budget, music, or salary. We underwrote the costs ourselves because we still believe in her unspoken but performed standards.
Most of all, we believe in performing. Because we are not all from the same high school, we put aside school rivalries and embraced a universal name: the Phyllis Merritt Singers. We have rehearsed in whatever venue will have us. We are the first group ever to perform in the Washington D.C. National Holocaust Museum. At first, our music shocked the workers, and they came forward motioning for us to stop. Then as they heard our texts in Hebrew by Jewish composers, they stopped and as they listened, they wept. When we finished, at first, no one moved. Then as we Gentile singers moved silently from the room, many in the audience reached out and touched our arms as we went by, a blessing for a blessing.
We are one of the first groups to sing in the Pentagon after 9/11. We sang about peace both in the interior mall and in the area surrounding the crash site. We sang “God Bless America” in the nation’s capital, a place which usually prohibits performance. Veterans living in the old Soldier’s Home (now called the Armed Forces Retirement Home) visited with us after our concert. When they heard we were singing at the World War II memorial, some gave us the names of their fallen friends to carry while we sang. The night temperatures quickly fell and the warmth of our voices made vapor, as if the songs released whatever ghosts might linger in that place.
An impromptu concert in the national cathedral stopped decorators preparing for Sunday’s hanging of the green. We sang two Christmas concerts at the Biltmore Estate. After each performance at least one person asked why we would travel so far to sing unannounced and unpaid, especially at places where music often seemed out of place, for people we didn’t know. Our answers, both personal and unique, remain known only to the speaker and the listener.
If not for Miss Merritt, I might never have resolved some of my personal conflicts. Robert Frost said that he had a lover’s quarrel with the world. My quarrels are of a lesser scope yet equally as grave— I have had a lover’s quarrel with the church. Quarreling with an organization seems foolish, since organizations are nonresponsive and oblivious to individual remonstration. I had a pseudo-reconciliation with the church after Mrs. Griffith taught unison singing in my elementary school. Once I reached the age of singing accountability and joined the adult choir at church, the experience immersed me in the whole body experience of multipart sacred choral music.
I had heard choral music as it moved through the sanctuary. Never before, however, had I bathed in its harmony, immersed from all sides by sounds so in tune that my baby fine hairs stood. That sensation evoked the same surprised visceral response as the only time I swam naked. In the middle of a hot muggy night, unnoticed but for the shadows cast by moonlight illumination, I slipped into an above ground pool. For the first time, I knew the physical shock of moving water against unclothed skin. Each experience, the water and the choral harmony, provided a moment of wide-eyed, involuntary, inhaled, “O!” The music provided an easy and long lasting peace, until I moved into high school.
The real quarrel started with the infiltration of new theology—much like the confusing “new math” of the ’60s or the common core curriculum today—with its edict of relevancy and influx of entertainment. For me, the church worshiptainment of Facebook discussion isn’t new and wasn’t spawned from praise choruses, musicals, or electric instrumentation. It began in the 1970s Southern Baptist Sunday school. In the11th grade department, Joseph and Mary arrived in Bethlehem not on foot and donkey, but in a shiny pink Cadillac convertible. The kids chosen to read the scripture passages did so seated behind the cardboard steering wheel. Who knew the Virgin Mary sold Mary Kay?
And that is when, much to my mother’s shame, my grandmother’s disappointment, and my father’s tolerance, I became a Presbyterian. I remained a Presbyterian until I could no longer stand the banishment of choral music in congregations who barely sang unison during hymns. After that, I determined church membership not for the preaching but for the music. For me, God is Himself a trio and has always been present in the harmony. The ensemble. Vocal or instrumental. Harmony allows freedom beyond. In my clichéd “heart-of-hearts,” I have never wanted to be a vocal soloist because most of my life, I’ve been a social soloist: I teach alone, live alone, sleep alone, usually eat alone. These characteristics are not complaints, just statements of the obvious.
So, perhaps for now, my lover’s quarrel has reached a stasis. I have made a place and from my vantage point a certain peace in a world where more or less I still move as “the other”—except for the rare occasion with good choral singing and I become part of an “us”—but that intimacy dissolves with the final overtone. From my position in whatever choir loft, whatever others’ motivations may be, I sing my part. I hope I have done Miss Merritt proud.
This year celebrates the seventy-fifth anniversary of the opening of Escambia High School. The organizers of the events have asked Miss Merritt and the Rebelaires/Escambians who sang under her direction to gather on May 8 and perform works from the group’s repertoire. Selections include the “Star Spangled Banner,” “Alma Mater,” “God Bless America,” “I Hear a Voice a Prayin’,” “Flower of Beauty,” and “For All We Know.” If we are lucky, our audience will understand the power and hold a high school class taken at least forty years ago still has.
As I sell my art and craft for a living—both in markets, street fairs or street festivals, and through galleries or stores—I walk miles. I don’t walk to the markets, of course. I load (rather overload) my car and drive to my destination. Then I carry my stuff (tables, canopies, racks and shelves, crates of potteries, heavy sculptures, large canvases) from my vehicle to their display location. Sometimes I use a wheeled contraption, but delicate items (the most numerous) need to be transported by hand, one by one, repeating ad libitum the trajectory between car and booth, store, or gallery. I don’t sweat, don’t fret. I breathe quietly. But I walk miles, several times a week. I have for my entire life.
Therefore, this banal motion—plain and functional, parallel to the ground—is such a basic habit that I feel it defines me. I don’t just walk. I am a woman walking.
Quite an ambiguous label, as the first thing it unavoidably evokes is a peripatetic, a prostitute—one who treads the sidewalk back and forth seeking a client. The association doesn’t bother me at all. But the picture coming to mind as I self-define-while-in-motion is a different one.
I see women of my motherland (the far South of Italy) in the era of my childhood. Four, five decades ago. A time that seems remote. A universe lost and revolved.
I said ‘picture,’ yet the visual element of the memory is minimal, fleeting if not utterly absent. I remember those ladies in my spine (with a downward shiver, quick like a whiplash) and in my heels (meeting the ground with passion and ineluctability, embracing it, kissing it).
I said ‘ladies.’ A joke. No, they weren’t ladies. Or prostitutes. I said ‘heels’ meaning the body part, the round rear end of the human lower extremity. Calloused, for the very specimens I am referring to, and encountering the ground with such frankness that an intercourse couldn’t be avoided—a profound love affair due to the very absence of shoe heels (those prostheses meant, indeed, to avoid the sultry intimacy of body and soil).
Ladies wore heeled shoes by definition, at least in the era I am recalling. Fake heels signaled status, and a seductive purpose. They twisted and modified the act of walking, making it demonstrative rather than functional. Walking on even moderate heels is intended to be seen, acknowledged. It becomes a visual display and an auditive one—its clicking a Morse code sending faint yet clear messages. Here comes a female to be noticed.
Women I recall from my childhood, walking in their men’s shoes, worn sandals, or bare feet were essentially peasants. Sometimes nuns.
Also nuns progressed in the fashion that my body recognizes—fast, efficient and smooth, parallel to the surface of the earth, a vector. More or less, as their motion contained spurious elements, a whatnot, a disturbance I’m not sure I can pinpoint. Once more, perhaps, acoustic: the rustle of excess clothing, the unnecessary fluttering of veils offering to the surrounding air more friction than needed. The metallic chime of dangling rosaries, crosses, beads. The dull thumping of ropes, fringes, and tassels. A white noise, superfluous, distracting.
Walking women I recall from my childhood—nuns included—were working women.
They often carried things, like I do. Baskets, bundles, infants, animals, or a combination of the above. They used to carry heavy loads on their heads—an ability I imagined I should soon acquire, doubting I ever would, because it seemed superhuman.
In today’s Western world, I wonder who could balance on her head a jar full of water, a giant hamper of firewood plopped on a strip of cloth, on top of coiled hair, and no fasteners. Then walk miles on unpaved dirt roads, accidented riverbeds, rugged stone stairs of medieval hamlets, down the slope with the goats, on sensible, sensitive heels. A Pilates instructor, perhaps? A star modern dancer, top model? None of them.
Women carried the heavy stuff on their heads, for their hands and arms to afford other loads.
Aplomb. The straight line that falls from the fontanel—at the center of the imagined circumference whereupon the jar or hamper is placed—right between the heels, passing through the coccyx, the tail.
Aplomb. To achieve it, you need to keep your chin down. No, you can’t look up. Your perspective cannot be higher than eye level, the horizon. A terrestrial perspective. Pedestrian. As if all claims to elevation were barred.
When I (rapidly, as I really haven’t that much time for musing—these things need to be transported over there and they won’t do it on their own—I have distance to cover)…When subliminally, at a spinal level—gently, unobtrusively tickling my consciousness—I recognize myself as a walking woman, two figures always flicker in the back of my mind. They are vague, not truly familiar, unrelated to one another. Yet they invariably lit up.
One of them is a literary reference. She is Yasushi Inoue’s mother, as the famous writer describes her in a memoir devoted to the last years of her life.1 Afflicted by dementia, she has withdrawn within a world of her own, barely recognizing her relatives, when one night she leaves her bed and runs into the street in a frenzy.
When she is found, she is steadily walking on the main road leading to a nearby village. Inoue describes it: “On one side were paddy fields a lever higher than the road, and on the other side were more paddy fields, but that side was terraced and the terraces ended in a ravine. Bathed in the white light of the moon, Mother was walking along this road. She was looking for me, the infant.”2
Prey of hallucinations, the eighty-five-year-old woman is reviving an episode that occurred when, at twenty-three, she thought that she had lost her baby (the writer himself). Desperate, she rushed out and started frantically on the road, looking for a toddler who had vanished in the middle of night. Heading anywhere and nowhere—her diminutive silhouette cut out by the moonlight.
The brief passage describing the incident—rather the impression it leaves within the author’s psyche—is strikingly intense. It’s a small lens, yet powerful, under which the entire narrative comes into focus.
As he records his mother’s increasing evanescence, Inoue starts to reassess her overall incidence in his life, which appears to have been tenuous at best. Triggered by her lapsus, omissions, and apparently incoherent behaviors, he re-examines the past, and he is forced to admit that his mother embraced family life half-heartedly, more compelled by outside circumstances than by her own desire. Overwhelmed by the war and too many pregnancies, she even sent her boy to live with a relative, at a very early age. Therefore, their time together was minimal, their relationship nominal.
Having formed a happy, healthy bond with his substitute mother, Inoue didn’t register suffering due to his mother’s coldness, or so he believed. Only on witnessing the fading of her memory and mind, echoes of her remoteness reach the adult man, weaving a chilly shroud of disconnection and lovelessness.
Yet such gloomy veil is torn apart when young-old Mother rushes into the street in her night kimono. Perhaps freezing, perhaps in a sweat but not realizing it, probably barefooted, she engages on the road leading to the village of Nagano—a ravine at her side and the moon above her—running after the baby she believes (she knows?) she has lost (let go of? abandoned? given up?).
“In my mind’s eye I conjured up a picture of myself as an infant with my twenty-three-year-old mother walking along a road bathed in moonlight, searching for me. And there was another image—of myself in my sixtieth year, searching for my eighty-five-year-old mother on the same road. One picture was permeated by a chilling quality, the other by a certain awesomeness. These two images, however, immediately became juxtaposed and merged (…) The chill and the awe also fused and were penetrated by the piercing light of the moon.”3
I am not sure why this passage impressed me so much when I read it—to embed itself not in my mind, but in my body memory.
No doubt, the page is loaded with emotional meaning, as it witnesses the single time when the author realizes a connection between mother and child. Love and caring were there, at least at a given moment. In its fleetness, such epiphany leaves an indelible mark. It is both “chilly” and “awesome.” It possesses an evident healing quality, though no awareness of a wound in need to be cured was there.
What most strikes me is that such palpability of feeling doesn’t express itself in words—as it would be expected—or by holding hands, with hugs, caresses and kisses. It is expressed by walking, by the frenzy of Mother’s frail yet strong legs harpooning the road—the connection symbolized by the road itself.
The other woman I see walking (the first image always merging with the second one) is unknown to me as well. My father mentioned her briefly—his dad’s mom, my great grandma.
The year is nineteen thirty. She is about fifty. Her husband has passed away. She has borne ten, eleven, twelve children? Some, of course, are grown up, but some are at home, and they need to be fed. She was left with lots on her hands and no trade—not an official one, though she doesn’t stop toiling from sunset to sundown.
But she doesn’t lose heart. She has letters composed for her, then sent to America or Germany, to call back a couple of immigrant sons. Help is wanted to put food on the table for the youngest. She sews, washes and irons, mends, embroiders, and so do her daughters. A few of them get married. One rises up the ladder and becomes a midwife. The early widow, indeed, keeps the family afloat.
That wasn’t so current. Father sketches his grandma’s profile with a certain pride. Tough, smart, fearless, resourceful. A hard woman, he says—a thin frame yet solid, strong-legged.
She had inherited a property about twenty miles away. Just a scrap of land, planted with olives trees and a vine—if cared for, it could provide yearly profits.
Twice a week, she went to survey it as needed. On foot, as she couldn’t afford transportation, but—said Father—she didn’t mind walking. She left in the wee hour and came back in the evening light. The round trip plus dealing with the farmhand took the day—most of it spent en route.
Dust and rocks. Deserted country road, small paths, dry riverbeds. Atop, not the moon but a scorching sun. She wore black, her head scarved. On leaving, she had probably dampened her braids, then coiled and pinned them. They kept her skull moist, her brain cool.
She didn’t seem bothered, Father said, by the road. Straight like a flagpole and fast as a fox, an arrow. But—he adds with a sort of embarrassment—she couldn’t be defined a sweet, tender creature. On the brisk, hardy side.
I have wondered about those daylong pilgrimages, almost a hundred years ago, so distant from where I now live, so remote.
What did my great grandmother think about? Plausibly her property, and the practical issue she was well determined to solve. Other practical issues that she had left at home. Money and food. Chores and chores. Debts. Deadlines. A web of trivia. Small things, and inexorable. Like steps. Plain. One at the time. Forward, forward. Inexorable.
What else did this un-gentle, un-romantic, un-lyrical deambulating human being think about? Did she enjoy the rough, barren landscape? The verdure, in the appropriate season? Flowers? Birdsong? Not sure.
In so long a trajectory did she fall into a sort of trance, sometimes, as if trivia could vanish and just motion remain—this firm pulse, quiet impetus, this wave up and down her spine? She must have. Did she feel the soft friction of air, even in the noon heat? Even then, the fresh air. Perhaps, freedom.
Artwork at top of page is courtesy of the author.
1Inoue, Yasushi, Chronicle of My Mother, Kodansha International, New York, 1982
“Why do all the kids in these paintings look like old men?” Sabine asked, inspecting the legacy of some long-dead Italian.
I tilted my head back to drum up a few extra millimeters of breath, placating my air hunger for another minute or two, and replied, “I think those kids are supposed to be Jesus.”
“And why, exactly, does the baby Jesus have your dad’s hairline?”
I shrugged. “The immaculate recession?”
She rolled her eyes, but didn’t say a word. She couldn’t. It was my birthday. My fortieth, in fact. A day I had never expected to see.
In honor of the occasion, we’d left home for a trip down the coast in our wheelchair-accessible minivan, putting our faith in the traffic gods to deliver us through the San Fernando Valley and into the rolling hills of the Santa Monica Mountains without a blood sacrifice—though, as anyone who has ever served time bumper-to-bumper in Los Angeles might, we would’ve considered it.
Our destination: the Getty Center—a haughty fortress of travertine and glass that dominated a ridge of the aforementioned mountains, offering views without to rival those of the art within. Promises of French Impressionism had drawn us forth, driving us through the endless rooms of Renaissance religious artwork that the late oilman J. Paul Getty preferred—including, of course, prematurely aged baby Jesi.
“There’s a name for those little dudes, but I can’t remember it,” I said, nodding at another one of the proportional dwarves as we headed for the nearby exit. “They used to be all over the place in the Middle Ages.”
“Why? Was there a plague that made everybody forget what babies looked like or something?”
I exhaled something approximating a laugh. “No. Jesus was supposed to be a perfect being, so he couldn’t come out all needy and naïve. He had to be wise beyond his years from the start. He had to be perfect.”
“Yeah. Perfectly creepy.”
She opened the door for me, and we plunged into the searing sunlight of outside, exiting one of four spare, angular buildings in favor of an equally spare central courtyard clad in porous limestone. The courtyard, liberated from the surrounding urban sprawl, spanned the visible world, creating an interstitial purgatory less Hieronymus Bosch than Michelangelo Antonioni: sterile and lonely and vast.
No matter how much it may have looked like one, however, this place was no afterlife. In the afterlife, one likely didn’t struggle for breath, as I was at the moment. The schnitzel and stuffed grape leaves from the Israeli place we’d stopped for lunch bloated in my guts, shattering the illusion of inviolability as it squeezed the vigor of all creation from my scarred and atrophied diaphragm.
This wasn’t a new phenomenon for me. Once upon a time, I could breathe on my own. All the time. As my Duchenne muscular dystrophy progressed, however, I required ventilatory support overnight. And then during the day for a few hours. And then a few more. And so on, until my current schedule of three additional hours, three times a day.
But I was also a stubborn American, programmed for rugged individualism, suppressed emotions, and a hatred for all weakness. So I only ventilated in private. Beyond the relative obscurity of my home or minivan, I took my chances with hypercapnia and its mostly tolerable symptoms of headache, fatigue, and muddled thoughts.
From the outside, such masochism must seem baffling. Why would I, crumpled and cachexic novelty to all, care how I presented myself to other people? It would be like water worrying about its perceived wetness. More likely, I was trying to convince myself of something. That I wasn’t getting worse. That I wasn’t going to die. That, somewhere deep inside, I was still the same little blue-eyed boy who had walked the black sand beaches of Hawaii and fished the alpine lakes of the Sierra Nevada for the briefest of moments and taken it all for granted.
I never understood society’s aversion to taking things for granted. There’s no contentment in it. Better to pretend the status quo will last forever as long as you possibly can. Right up until the point you leave your ventilator in the car on the far side of a three-quarter mile tram ride and find that you desperately need it.
Sabine, looking as exhausted as I felt, collapsed onto a short wall for a quick rest and social media update. As she flicked through her phone, I glanced past her. The land fell away on the other side of the wall, revealing a terraced garden and then the entirety of the sprawl—a mosaic of well-organized cubes and haphazard garnish that paved nearly all the eye could see.
The toothy buildings of Century City rose in the medium distance, with the grasping skyscrapers of downtown well beyond. At the edge of perception drifted a hazy suggestion of the gossamer Pacific, remote to the point of obscurity, yet so much closer than the tsunami of revitalizing tidal lung volume that awaited me on the back seat of the van. I felt as stupid as I did inadequate for leaving the ventilator behind, but I wasn’t about to abandon the Getty because of it. Not until I saw me a Van Gogh.
Sabine snapped her fingers. “Homunculus,” she said, glancing up from her phone with a satisfied grin.
“Gesundheit,” I replied, forcing another breath and bracing against a world increasingly bled of color and sharpness.
“No, you dork. That’s what they call the weird Jesuses. It means ‘little man.'”
As she spoke, my eyes locked on a kid in a wheelchair with obvious Duchenne crossing the courtyard not far away. Check that. Two kids. One on either side of puberty. Brothers, no doubt. Puffy-faced and puffy-limbed like I had been at their age, before I emaciated into my current form–now more Charles Schultz than Peter Paul Rubens.
“Poor bastards,” I said.
“Who? The Jesuses?”
I nodded. “Everyone deserves a childhood. Martyrs most of all.”
The boys, surprisingly flanked by both parents, turned in our direction, and I fought the urge to hide, to spare them a glimpse at the specter of their future. I knew the life these two would lead, or at least the path that their debilitation would take, robbing them of everything they once were and could have been and replacing it with a terrified cesspit of traumas and regrets.
Growing up, I’d witnessed my destiny every three months in the silent, skeletal sentinels of the child muscle clinic. Now that I’d become that destiny, I felt only pity for my younger self. For these boys. I had become my fear. And theirs.
Sabine squeezed my forearm. “You okay?”
“Yeah. Just getting old.”
The boys drew nearer. Unable to escape any other way, I closed my eyes. If I couldn’t see them, maybe their passing wouldn’t be so bad.
“Forty years,” I said, shaking my head. “You know they stop keeping track of mortality rates for Duchenne at age twenty-four? Half of us are already dead by then, so I guess it’s not worth the hassle.”
She squeezed my arm harder. “But you’re not dead.”
“I know. And I feel guilty every day because of it.”
“Like I said, half of us are gone by twenty-four. I’m forty. What have I done with all that extra time?”
“You found me.”
I opened my eyes. The boys were gone. Their parents too. But not Sabine.
“Yeah. I found you. A beautiful, able-bodied woman to love me and take care of me. I’m a god damn unicorn.”
She snorted, then stood up. “Come with me, Mr. Unicorn. There should be some Wheatstacks for you to eat in the West Pavilion.”
We headed into the appropriate building and blew through the first few rooms like in that old Godard movie, chasing the brass plaques as they ascended chronologically toward the mid-nineteenth century; there wasn’t enough time to see everything and I didn’t want to miss the good stuff. Story of my life.
I blame whoever first decided we should all live every day like it was our last. Carpe diem and all that. So much pressure. So exhausting. If I lived a single day like it were my last, I’d be too tired to leave the house for a week.
A sudden crowd announced the arrival of the Impressionism gallery. I skirted a slow-walker and darted through the congested opening, nearly colliding with one of the Duchenne boys making his way out. He didn’t look at me, and I returned the favor. We passed each other like those clichéd ships in the night. Two Titanics—one still chugging to New York, and the other already at the bottom of the sea.
His older brother followed, nearer the iceberg but not yet sinking, and I decided those of us with Duchenne needed a secret wave, like bikers sharing some dilapidated highway, though most of us couldn’t raise our hands anymore. Maybe a secret head wiggle would do.
There were barely 10,000 of us in the whole country, we brothers (and the rare sister) in disease. Why estrange ourselves from each other?
Inspiration struck me as I slipped past the second boy and I whispered, “What’s up, my brother?”
He either ignored me or didn’t hear, but his trailing mother must’ve seen my lips move because she smiled and mumbled a greeting. She knew what I was. So did the dad. I was a seer, and the news was all bad. Still, they had to be nice to me. If they were, it meant their own children might still know kindness in their debilitated future.
I had parents too–long-since divorced, but both still living—yet these boys and I were the three of us orphans, for muscular dystrophy is an orphan disease. It’s not common enough for a cure or treatment to be economically viable, so there isn’t one. In short, we’re not worth the effort. If only we had AIDS instead, our hope for the future might be something more than mere delusion.
We were literal orphans as well, despite our living parents. Like Mowgli or Tarzan, we’d all been raised by a species alien to our own. For no matter the love these Homo sapiens showed us, they’d never understand our kind completely—we, the Homo dystrophus. With our difference in lifespan, in presentation, in social interactivity, we were demonstrably “other,” and perhaps even deserving of our marginalization—like Neanderthal man, consumed by the fitter species until we were but broken threads in a wider tapestry. Ain’t internalized ableism grand?
Another breath and I was beyond the so-called family, deposited into the heart of the crowded gallery. I found an opening and cut right, stopping in front of one of several works by Claude Monet.
After a moment, Sabine appeared at my side. “Why are you looking at that one when the birth of Impressionism is right next to it?” she asked, motioning at a sunrise view of Le Havre painted in 1873.
But my eyes were locked on The Portal of Rouen Cathedral in Morning Light, done twenty years later. I stared at the puffy, drab brushstrokes and wondered how many of the abbreviated, messy things streaked across the canvas. 10,000, perhaps? Discrete, yet all bound to the same repetitious, atrophied palette, and all working together to create the pale imitation of something holy to our pattern seeking brains.
I whispered the name to myself. Ruin. That was me—a ruin of my former self. A stained heap of marble going through the motions until I toppled into obscurity. Or perhaps it was pronounced “rue on.” Either would do for my purposes.
When I looked away from the painting, Sabine had moved across the gallery to check out Van Gogh’s Irises. As I turned to follow, the floor beneath me wobbled. No, not the floor. It was me.
I gasped for a breath that didn’t want to come. Sabine was too far away. There were people everywhere. Talking, walking, obstructing. The only opening was out, so I took it, veering through a doorway and into the elevator atrium.
The family was there. The mom saw me and smiled again.
“How old are you?” she asked.
The dad jabbed at the elevator button, keeping his eyes locked on a nearby gift kiosk.
“Forty,” I managed. “Today.”
I didn’t know what to say, so I said nothing. The world swayed beneath me. Stars wriggled across the room.
“It’s nice to see you out,” she said. “They won’t say anything, but I know the boys appreciate it.”
I glanced at the nearer boy. The older one. He winced, then stared at the top of his pudgy knees.
“Why?” I said, face flushed and heart thumping.
“You give them hope,” she said. She reached for my shoulder, then thought better of it. “Forty years old and you don’t even need a ventilator.”
My diaphragm forced an involuntary heave. What little color remained drained from the world. My vision tunneled. Air hunger crushed my spine behind my distended guts.
But I smiled anyway.
Probably best to keep up appearances.