Acceptable Forms of Agony

Before she became a saint, Bernadette Soubirous was a sickly asthmatic. Barely four and a half feet tall. Living with ten family members in a basement-cum-prison. She was a teenager when she first saw the glowing apparition of Lourdes. She called it “aquero,” Gascon Occitan for that.

Not a woman, not a vision, not the Immaculate Mother. Only that.

At that’s bidding, Bernadette ate muddy roots, bathed in cold water, demanded a shrine. The villagers thought her insane. But after enough visitations from that, she was judged divine. They say that even a century after death, Bernadette’s body remained free of decay. Incorrupt.

I prayed to Bernadette as a child and kept a black-and-white photo of her over my bed. Was it blasphemy, worshipping a saint over Jesus? Show me the girl who has not yearned to believe that that which makes her a pariah is also what makes her special.

Maybe Bernadette was the reason I applied for the job at Holy Trinity Elementary School. She was certainly the inspiration for my lesson plan on the saints. The school’s religious curriculum for grades four to six included sections of the Old and New Testaments; the Ten Commandments; learning the meaning of sin and redemption. There was only so much one could say about the Bible to ten-year-olds. Every February I assigned the students to read a biography of their chosen patron saint, then write a prayer inspired by their research.

Apollonia of Alexandria was asked to intercede on behalf of a student who didn’t want to get braces. (The martyred woman was tortured by having all her teeth pulled out.) Another student begged Saint Hunna, the Holy Washerwoman, for a miracle that would result in clothes that never needed to be washed. A prayer to Saint Sebastian (shot with arrows, clubbed to death, but reputed to assist athletes) requested divine intervention to win an upcoming soccer match.

Sometimes I worried that the violent ends of these holy people were too gruesome for young students. Other days I feared I was indoctrinating children with religious beliefs that consisted only of shame and exclusion. But the Holy Trinity staff appreciated my theological questioning. I even liked having religious conversations with the children. I could almost make myself forget that I’d studied to be a music teacher—and that itself was a backup plan, after it became clear I’d never be a cellist in a chamber ensemble. But few schools had the budget for arts education anymore. A job, any job—even one that required moving back to my hometown—was better than unemployment.

It was during my third year of teaching the saints at Holy Trinity that the burning began. It started as a boy named Damien read his hymn to Maturinus, patron of clowns.

“Oh holy pagan I pray to thee—”

Heat pricked my wrist like the bite of a fire ant.

“For divinely inspired hilarity.”

The pinch grew to a hot patch spreading across my hand.

“No rubber chickens or farting sounds—”

Invisible flames licked the skin of each finger, pressure building under the nails.

“I want a prank that truly astounds.”

While Damien extolled Saint Maturinus’s many virtues (expelling a demon from someone’s body; converting his pagan parents to Christianity; calming drunken mobs), the pain spread from my hands to my elbows, from elbows to shoulders, from shoulders to neck, then down my torso, till I was bathed in fire. Just as the agony became unbearable—I was gripping the bottom of my chair, restraining myself from hurtling to the faculty room where I could scream—the fire dissipated. My nerves tingled in the sudden absence of pain.

Damien finished with a bow. He basked in the students’ laughter, ignored my watery look of approval. Back at his desk, he began folding his poem into the shape of an airplane.

“You’ll still need to turn that in, Damien,” I reminded him. My throat was dry.

Later, in a bathroom stall, I rolled up the sleeves of my blouse. Pale skin, brown hairs, freckles. No redness. That night I threw away all my soaps, shampoos, lotions, perfumes, makeup, dryer sheets, and laundry detergent. Hundreds of dollars of chemicals to mask the smell of my own skin, all wasted. I slept on bedsheets washed in hot water and woke in the morning ready to pretend nothing was wrong.

*

Three weeks later, the pain returned. This time, it didn’t leave. I used up my paid time off making treks to doctors’ offices, sometimes driving two hours away from my northern Michigan town. On the very worst days I allowed myself a true sick day. I’d stand naked in the dark box that had once served as a closet, where there was least chance of any drafts. In that tight space, nothing touched my skin; the fire smoldered but didn’t flare.

The first of my colleagues to comment on the string of absences was Rosemary Gilman, the fifth-grade science and math teacher. A shrunken woman with a poof of gray hair, Rosemary leaned over me in the teacher’s lounge and whispered, “Is it cancer, dear?”

Startled, I didn’t answer immediately. “Most likely not,” I said. “No one is sure.”

Rosemary patted my arm and I tried not to flinch. “I’ll pray for you,” she said.

Three weeks later, the pain returned. This time, it didn’t leave.

Spring brought a flood of casseroles and get-well cards and bags of Easter candy. Some commented on my pallor and the dark circles hollowing out my eyes. Others recommended special diets: eat nothing but grapefruit, drink only bone broth, avoid white foods. On a rainy Sunday in April, our priest told the congregation that I was in special need of prayers. The faculty bought me an illustrated hardcover book, The Suffering of Saints, its title embossed with gold. I pretended to smile and thanked them.

At home, I tore out the page with Bernadette’s biography and put it under my pillow. Shorn of its only usefulness, the book was consigned to the firepit in my backyard. When its dense, acid-free pages refused the flames, I squirted lighter fluid on top. The fire flickered green as it consumed the book’s cover. I stepped away and felt the skin of my cheeks prickle with the pain of a smile. The smoke stung my eyes, my throat, but I watched till the book was ashes. The last thing I needed was a reminder of the way our culture glorified suffering.

Weeks of pain turned to months. When I didn’t start chemo, or break out in leprous lesions, or go blind, or claim I’d been pierced with the golden lance of an angel, the sympathy turned to distrust. The sixth-grade history teacher wanted to know how many extra days off I’d scored. The priest started cornering me to ask if I felt the need for confession. The school secretary “forgot” to order a cake for my birthday, then claimed she’d heard that I’d cut sugar out of my diet.

Only Rosemary continued asking after my condition. She brought me blueberry jam and eucalyptus-scented lotion. I carefully explained that every lotion I’d tried was too astringent for my skin. Instead of making a fussy apology, or suggesting another remedy, Rosemary offered to take my recess shifts for the rest of the school year. That way I could stay inside and rest.

She also loaned me a pearl rosary she’d inherited from her great aunt. The aunt had been a Benedictine sister and was said to have witnessed miracles.

“You’re a good girl,” Rosemary told me. “You’ll fight your way through this.”

Her kindness and confidence in my strength felt like more powerful benedictions than anything I’d ever received from a member of the clergy.

*

I saw thirteen doctors. Dermatologists, endocrinologists, immunologists. One psychiatrist, because many of the others were convinced my pain resulted from the stress of volatile feminine emotions. A neurologist finally gave the condition a name: Millard’s dysesthesia, colloquially known as “flayed-skin syndrome.” In other forms of dysesthesia, such as that suffered by patients with multiple sclerosis, the phantom sensations were a sign of nerve damage. The neurologist said my nervous system appeared intact. For reasons unknown, my brain now interpreted the outside world—be it water, air, cloth, or the fingertips of another human—as a source of danger. But because there was no real damage to my body, treatment options were also limited.

My parents, living on the other side of the country in their retirement community, couldn’t understand the illness. “Flayed-skin syndrome? Isn’t that a bit dramatic?” my dad said.

“Have you tried calamine lotion?” was my mom’s suggestion. She was convinced I had a bad case of eczema.

The diagnosis came with the summer and a reprieve from the classroom. Trapped indoors, I wore a bikini on hot days, a loose poncho on cooler ones. Satin, silk, cotton, and linen felt as harsh as a sandblaster. At a sporting-goods store, I found lightweight wool shirts. They turned out to be a boon. Pure wool felt almost comfortable, perhaps due to the natural oils trapped in the fibers. This discovery led to another—cleaning my skin with oil. Bathing in water was so excruciating I’d been limiting myself to one shower every week.

My brother, Nathan, returned to town every year for the Fourth of July. One day when it rained, his family came to visit me. Nathan stared at the blinds pulled down over all the windows but said nothing.

My nephew liked the darkness. “Ghost house!” he kept yelling.

(Did he mean that my house was haunted, or that I was?)

My sister-in-law, a chiropractor, offered to perform some adjustments. I’d be amazed how much tension the spine held, she said. And she offered to visit the town’s occult shop with me. “Clear quartz or amethyst would probably work best, though you could try bloodstone as well.”

“You still look great,” Nathan told me. “That counts for something, right?”

Yes, my skin was unblemished. Pure as Bernadette, dead in her casket. No visible sign of suffering. The lack of sun had made my pale skin luminescent. At night, my reflection in the dark hallway mirror looked like a creature trapped between the demonic and the divine.

*

The management of agony: This became my new mantra. Drink everything with a straw to avoid splashing liquid on my lips. Eat morsels of food that I could deposit directly onto my tongue. Avoid ceiling fans. When required to go outdoors, carry an umbrella. Fall asleep under the spell of painkillers. Make up prayers to Bernadette as if I were a sixth grader, then get angry when nothing happened. Every night I took the crumpled page from the book of saints out from under my pillow and carried it to the backyard with a pack of matches. Every night, I felt the dewy grass tickle my bare feet and the wind grate my skin, and I decided not to burn this particular saint’s image.

My cello sat untouched in the corner of my living room, its body accumulating dust. I could no longer lose myself in the music; the strings felt like knives pressed into my fingers. I stopped dating, because who would want to be with someone they couldn’t touch? When neighbors set off fireworks on random weekends, the booms interrupting my thin sleep, I imagined sneaking into their garages to burn all that colorful gunpowder in one huge symphony of flame.

I began dreaming of those saints cursed with stigmata. They pressed their bleeding palms against my cheeks, flooding my nose with the smell of iron. In other dreams I saw saints who had starved themselves nearly to death, their emaciated bodies a sign of their holy love. Their skeletal limbs twisted in swaying dances all around my elementary school classroom.

I no longer prayed. The stories of saints still brought comfort, but a perverse kind. In reading about the myriad ways these women had embraced pain—had encouraged it—I grew so furious that my rage momentarily blotted out all other sensation. How could they experience such torture and still see God as a benign, benevolent source of love?

Now I spat curses at God and refused to attend mass. I was no Teresa, no Bernadette, no penitent sinner accepting the punishment of an unforgiving body. Some days I was so desperate to escape this new reality that I thought about the train tracks on the edge of town.

Rosemary’s call rescued me from that darkness. She’d spent two months with her grandchildren in Cleveland. While she was there, she visited the Poor Clares of Perpetual Adoration. The old women still lived cloistered away from the world, but at least they had computers, Rosemary said. They marketed their holy oil online; she had a vial for me. Would I meet her at Holy Trinity church?

The management of agony: This became my new mantra.

She heard the hesitation in my silence.

“I stopped believing in God for a while after my husband died,” she said at last.

“What brought you back?”

“Whoever said I went back? I went forward. My faith is different now.”

I sighed. “We have to meet in the evening. I can’t . . . it’s hard to be outside in the sun.”

“Whatever you need, dear.”

*

We met in the church’s courtyard garden at 10 p.m. on a Thursday. With only the moonlight illuminating the flowers, the roses crawling up a trellis looked like black velvet. Their smell draped over us as Rosemary led the way to the sacristy’s side door.

“Father Marcus knows I like to visit in the evening,” she said, pulling a key out of her clutch. “No one expects an old lady to get up to any trouble in a church, of all places.”

I followed Rosemary through the back rooms, past closets that held the vestments for the priest and the altar servers. The room smelled of dried candle wax and frankincense. Incense wasn’t used for regular services. Had there been a funeral?

We came out of the sacristy and onto the stairs of the altar. Rosemary fumbled with a panel on the wall, and a row of lights illuminated the church. I turned to stare at the life-size statue of Jesus on the cross. Did the bones of his hands break when nails were forced through his palms? Had he wailed when they forced thorns over the thin skin of his forehead? Did the sites of pain blend into one throbbing mass, or did they remain discrete and individually identifiable? Christians had spent centuries praising this man’s sacrifice. Religious scholars far more erudite than I delved into theodicy, trying to understand how suffering could exist in a world overseen by an all-powerful, supposedly loving God. Even if I accepted the premise that Jesus died for humanity, it offered no solace. My pain served no one.

Rosemary gestured for me to follow her down from the altar and into the nave. She stopped in front of a stained-glass window. Unlike so many other depictions of Mary, this one showed the woman without a veil covering her wavy brown hair. Her blue robes came down to her ankles, revealing her bare feet on the sandy brown earth. There was no infant for her to gaze down at, yet she didn’t look forward either. Her eyes were directed slightly to the side, as if she were watching some horizon beyond your shoulder.

“The whole month of August is dedicated to Mary’s immaculate heart,” Rosemary said. “Can you imagine millions of humans worshipping one of your organs? It’s as strange as the reliquaries with the old saint bones. Though I suppose selling holy oil isn’t all that different. At least there are no body parts in it. And the sisters insisted it has curative properties.” She pulled a tiny vial from her clutch and settled it in my hand.

“Thank you.” The clear liquid reflected the golden overhead lights.

“You put one drop in each eye.” Rosemary was still staring at the window.

“What?”

“That’s what they said. By entering the eyes, it goes straight to the soul.”

“How’s giving myself an eye infection supposed to make me feel better?”

“Painkillers mask pain; they don’t cure it. They reframe your experience by suppressing something. Maybe the oil will help you see the pain in a way that makes it bearable. Of course, my feelings won’t be hurt if you decide to tuck that in some drawer and never look at it again.”

“You really think this will help?”

She continued to regard the portrait of Mary. “My husband died of a heart attack, quite suddenly. I was only forty-three. Too young to be a widow. I went a little mad, I think. Some people say grief is like magical thinking. We start believing in things without any evidence. I’m not so sure about that. Most people can’t quite face the fact that they’ll die, despite all the evidence. We need magical thinking in some form or another. It’s what makes living bearable.” Rosemary smiled at me. “I’ll be sitting right over there. You take as much time as you want.”

She retreated to one of the pews closer to the altar and sat with her hands in her lap. When I’d first started at Holy Trinity, Rosemary had seemed like the kind of teacher who couldn’t stand the thought of retirement. But eventually I’d realized it wasn’t the salary that kept her there; it was the students and other teachers. She knew we needed her.

Mary’s eyes were still looking past me when I turned back to the window. I no longer felt rebellious for being in an empty church late at night, or awed by the splendor of the stained glass and the high ceilings, or angry at the saints for their unyielding faith. I felt nothing but the familiar pain. Fire across my skin that burned hotter wherever clothing touched me. This was my reality: a pain so continuous that, when it wasn’t excruciating, it became boring.

Taking a deep breath, I unscrewed the lid of the holy oil, tilted my head back, and carefully let several drops fall into each eye. The oil stung, then made my eyelids feel slightly gummy. I glanced around the church. Rosemary sitting with a small smile on her face. The unlit candles. The empty pews. The night sky behind the colorful windows. I waited for something to happen, for a change to come upon me. Minutes I waited, growing more frustrated. I’d let myself be tricked by magical thinking. I’d fallen for the belief that I was worthy of a cure, that I had suffered enough and could go back to my old life. But Rosemary had said that, too, hadn’t she? There was no going back. Only forward.

Just as I turned to leave the window, movement flickered. Moving closer to the window, neck craned back, I realized it was flames. Orange flames of stained glass, geometric shapes rippling around Mary in slow motion. They consumed the hem of her robes, then her knees, then her waist. All the while her smile grew larger, until it was the joyous radiance of ecstasy. Her hands reached into the blaze to splash its hot tongues onto her face and neck. Smoke rose from her disintegrating robes.

I felt the fire grip me as well, blisters erupting across my skin, heat consuming muscle and blood. It was so much stronger than anything I’d ever experienced, strong enough that I screamed with the pain of it. But my open lips only invited more oxygen for the fire, and the piercing cry came out as a rasp. The fire streaked down my throat and into my viscera, yet somehow I retained the ability to see. I watched everything around Mary turn to ash, till there was nothing left but her skeleton and her glowing red heart. The skeleton clapped its hands together with a dry patter, then held one out to me. My own hands had been reduced to charred bone, and I reached up to accept the skeleton’s embrace.

But instead of grasping my hand, the woman pressed several fingers against my skull like a blessing. She said, in the crackling voice of the fire, “We are our own gods.”

I felt as if her eyeless skull watched my own for hours, till daylight touched my skinless shoulder, warming the bone. But then I blinked. There was Mary in her stained-glass form, whole again, and the sky beyond the window was dark, and the heat of the sun was only the familiar pain of my skin.

My skin, the barrier between the rest of my body and the world. My skin, which had convinced my brain that it was being stripped away. Only now the sense of being flayed felt like an echo of the fire that had chewed through my body and through Mary’s. It still chimed across my nerves, from fingertips to spine and on down to toes, painful, unpleasant—but also, familiar. A bearable agony instead of an alien one.

Rosemary had fallen asleep on the pew. I reached down to touch her awake, preparing myself not to flinch at the heat of her body on my hand. The normal lightning jab shot through my fingertips, but its white fire felt muted, as if I were watching it from a distance.

She blinked awake and said, with a little intake of breath, “Oh—I thought you were her.”

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