Mustard Seed

Jessica Penner, Nonfiction

Earth’s crammed with heaven,
And every common bush afire with God:
But only he who sees, takes off his shoes…

- Elizabeth Barrett Browning

“The patient is my god in the operating room,” my neurosurgeon said shortly after the towers fell on September 11. This he said to my small gathering of supporters in a hospital waiting room. This he said to assure them that he would not be distracted by world events while he was operating on my event.

I was God that day. It was rather uncomfortable to be a deity on that particular day—at least I would have thought so if I had been conscious. But I suppose I wouldn’t have really believed I was God on the day a large bony tumor was extracted from my brain a few miles from the Pentagon. A god does not have to deal with such troubles.

So, I was God. And did not want to be. Because I had resigned my faith in that kind of god long before.

It was ingrained in me at a very young age that if I had faith the size of a mustard seed, if I truly believed that God was out there and Jesus stood as a gatekeeper of heaven, anything could happen. My bones that had been twisted since birth could straighten. The mountain would be moved. I never understood the point of moving a mountain. There was no trouble in a mountain being where a mountain was—it was people who kept fighting the mountain that were the problem.

When I was ten, my family briefly attended a Vineyard church. That meant singing praise songs with clapping and raised arms instead of solemn hymns, and emotional prayer sessions instead of quietly bowed heads. The congregation consisted of the unseen of my small hometown: Africans, African Americans, South Asians, Native Americans, Latinos, and aging hippies—a departure from the congregations we were used to. The church had a distinct scent of moldy pews and hymnals.

The Vineyard movement of the late eighties was raw. I remember my mother singing praise songs with lifted hands, mascara dripping from her lashes. I sat in the pews for what seemed like hours, waiting for my parents to finish praying at the makeshift altar.

One night my family attended a revival in a high school auditorium that reeked of sweaty socks. There, after stories of healing and salvation, a thin, balding man came and placed his hands on my short, twisted leg and prayed for a long time. My parents and the praying man crowded around me; I looked at his bent head and listened to his nearly-weeping voice as he begged God to come down and heal me. I wondered if this would be it—the moment we’d all been waiting for. I wondered what I would do first when I was healed, but I couldn’t think of anything. Though I had heard stories of stunted legs like my own growing under a preacher’s hand, I never thought it would happen to me.

When the man finished praying, everyone sat still, as if waiting for a wild wind or the Voice of God to swirl around me and bring me to wholeness. Nothing happened. After a while, the man said we should keep praying and waiting. He said God works on His own timeframe, and we should be patient.

I knew that it had nothing to do with God—it had to do with me. I hadn’t had enough faith. My faith was nothing in the eyes of God.

The man in the high school auditorium was attempting to pray out what was buried deep within my body: Ollier’s Disease. It is a rare disease that causes tumors within the bone, known as enchondromas. The tumors inhibit normal growth, often twisting the bones inward, so that the limbs are shorter, misshapen and brittle. I broke both of my legs three times by the time I was eleven. Each time I broke a bone, one more joy of childhood was crossed off the list: jumping over piles of dirt at age eight; hanging on a jungle gym at age nine; riding a bicycle at age eleven.

A few years ago, I came upon a book filled with pictures of circus freaks and other oddities in the nineteen century. Many of the people had twisted and oddly shaped limbs that looked as mine would have been had I not been born in the late twentieth century.

“I’m sorry,” I said to the boy with the perpendicular leg, to the woman whose arm twisted behind her back. “I’m sorry you were born too soon.”

For several years I was in and out of hospitals as doctors wrestled with my body in an attempt to override its destiny. Early in this struggle, one doctor thought he could merely force my left leg, which was beginning to turn inward, straight. I was too young to remember this; I’ve always imagined the tool used was like a large set of pliers. A part of my skin was destroyed in the attempt. A skin graft hides the devastation somewhat. My mother remembers that the doctor who did the grafting was furious at the doctor who had tried to force my leg straight.

“I don’t remember his name—the good doctor,” she said when I asked twenty years later. “He was from India, I believe.”

I have an odd vision of my Indian savior, a tall, brawny man with flowing black hair and flashing eyes, raging at the blundering physician. If he had been there at the very beginning, maybe the giant pliers would have been avoided—maybe he understood you cannot change what is firmly established in the DNA. You simply try to work with the material you have; you take the flesh and reshape it over the damage.

Perhaps that was the intention of Gavriil Abramovich Ilizarov, the doctor in the Soviet Union who created the apparatus that changed my life. The Ilizarov apparatus consists of four metal circles that resemble child-sized bicycle wheels. Thin rods are crossed through a bone that has been strategically broken. The wheels are held together by the rods and nuts that can be moved with an Allen wrench. The nuts and rods slowly pull the bones apart about one millimeter a day. The broken bone tries to knit itself together, reaching for the ever-elusive other side, creating new bone. When the bone has finally reached the correct length, it is allowed to solidify. I was told the first apparatus was made out of old Jeep parts. I imagined Dr. Ilizarov in a cold shed, surrounded by the darkness of Communism, building a device that would change my life. Because of Dr. Ilizarov, I can walk without assistance; only a leg full of scars and a slight limp remain.

One of my childhood doctors had studied this torturous contraption in Moscow during the waning years of the Soviet Union. I knew little about the USSR—other than the fact that it wanted to destroy America—but I imagined that it was a forever bleak place, continually covered with snow and dingy clouds. I was in awe of the bravery that took him to what seemed a likely sort of hell. I saw him as another savior—I think my parents did as well. We all wanted to believe that if we were totally optimistic, if we spent enough time on our knees, if we did exactly what the doctor said, this time would become a mere memory—a thing to smile at years later in remembrance of our fortitude.

For the first eight years of my life, my doctors monitored the growth of the tumors. I understood that they were waiting for the right moment to apply the first apparatus. However, when that moment would be was a mystery to me. We drove three hours across the starkly beautiful Flint Hills of eastern Kansas to Kansas City every few months for x-rays of my tumor-infested bones. My mother said I would wait with unusual patience in the waiting room, and when my name was called, I jumped off the sticky orange chair and took the hand of the stranger without a look back.

I once thought it was proof of my strength and independence. But now, when I think of that moment when I took the hand of a faceless stranger, sadness slips in. Somehow I knew that I was alone in this journey; that to look back was useless, because it was I who was burdened with this body. Even Jesus wouldn’t follow.

Even though I didn’t have enough faith in God, I knew there were spirits that had power over my every move. My mother once flew to California to write a story about spiritual warfare. The entire time she was gone, I was sure the war would overtake her. I was sure the spirits would come for me at any time. I had faith in their strength.

For most of my childhood, I believed I knew who was waging the war—my grandparents. I had once overheard my mother say that they had abused her—not physically, but mentally, spiritually. When I was four or five, I dreamed I saw my grandmother naked, walking proudly down the stairs on a forest green carpet. The nudity didn’t bother me; it was the texture of her aging skin that fascinated and repelled me. Nearly translucent skin covered her breasts and abdomen. Veins like blue snakes writhed around her body. Her thighs were littered with deep wrinkles. I had never considered that the bodies of the elderly would age like their faces. Sometime after, I dreamed of my grandparents sitting naked in their den. Their skin was as I’d seen before on my grandmother, but now it was paper-like, ashy, as though they’d been buried in a bed of hot coals. They said nothing as I wandered around them, as if I did not exist. A rotting smell permeated the room. I knew my grandparents were dead, but I was the one invisible.

I was certain they were spirits out to get me. Spiritual warfare had arrived, and I had nothing to defend myself with. God would not intervene for one who expected mountains to stay where they were.

I was twelve when the spiritual warfare dealt its first physical blow. We were meeting my grandmother for lunch on a frigid winter day. Even the inside of the restaurant was chilly. I couldn’t get warm, even though I kept my puffy blue coat zipped up. Suddenly, I knew I had to leave. Something was coming.

I went to the restroom.

Something was coming.

A feeling of nausea came over me and a strange scent filled the room. Something had followed me and slipped inside. I sat on the toilet with my head between my knees, waiting for the end to come.

The end did not come. The scent dissipated. I had fought the demon and won, though I didn’t know how.

It was only years later that I understood: that was my first seizure. The brain tumor the neurosurgeon attempted to unearth on September 11 was beginning to reach for my frontal lobe with a long, slender finger.

I was fifteen when the final apparatus was removed. I was fully grown. The apparatus’ work was finished. The last time I saw my orthopedic surgeon was on a hot, windy day in the Salina, Kansas airport. He and other surgeons had begun traveling the region by charter plane so patients wouldn’t have to drive all the way to Kansas City. They examined people in a metal building that seemed to serve as an occasional hangar.

It was almost an afterthought, that last visit, which disappointed me. I had enjoyed the long drives through the empty Flint Hills that led to the artery rush into the city. There was no getting up in the damp morning light; no special stop to a particular restaurant that served fried cheese; no watching for the crooked tree on a certain hill I had claimed as my own. Those things had made the doctor visits more exciting, more of an event. Now, we simply drove an hour through the plains to the ugliness that was Salina.

I don’t remember the examination in the airport, only the parting in the parking lot. My doctor, a man who’d so figured in my childhood that my mother once brought him a birthday cake with purple frosting, said something vague, the usual call me if you need anything line.

That’s done, I said to myself, happy that it was the end, even if it was a bit anticlimactic. That’s done. Now my real life, the life without surgeries, can begin. I wasn’t sure what that meant. It was as if the past five years had never happened. I found myself at the revival in the high school auditorium, wondering what I would do first. I had no idea.

I was a junior in college and spending the semester in the Middle East when the spirits struck a second time. I was just outside the gates of the Old City in Jerusalem, on my way to visit the Dome of the Rock. I was passing an idling bus when the world was swallowed by a tunnel of shadow; a distinct scent and taste of metal slid through my body. I would have collapsed in the street had friends not caught me in their arms.

Within a few minutes, the scent and taste dissipated. I felt limp, dazed; the world seemed a bit displaced, as if everything had shifted a few centimeters off its axis. The sun and the dust blanketed me—I could see myself below them as if I were the sun, the dust.

The rest of the day I wasn’t quite one with my body. The only distinct memories of my visit to the site of Mohammed’s exit from this earth were the smell of thousands of feet both present and past and the rugs surrounding the rock. The rugs were old and worn, with lumps that might catch on my toes and pitch me forward before God.

No one except my boyfriend, Tom, and another friend, Bethany, knew what had happened that dusty day. We assumed it was food poisoning and went on with our lives. But my tumor was blooming larger and larger, and began attacking me more and more. I finally confessed this to the campus nurse four months after the episode in Jerusalem. She sent me to a neurologist, who prescribed a MRI, then sent me to a neurosurgeon, who eventually sent me to another neurosurgeon who carved up my brain and pulled out the offending article while four planes struck two blue-sky towers, a crouching Pentagon, a nameless field in Pennsylvania.

I don’t remember ever praying for healing on my own. It was as if I was once again in Jerusalem, sun and dust and air separating me from this smallish event in the world. I wanted the tumor to go away from me, but I doubted it would. My faith had been surer as a child but God hadn’t come then. I figured the dark space in my brain had bided its time. Waited for me to get comfortable with my life.

That’s done, I’d once thought. That’s done. I laugh now at the deliberate innocence of that thought. As if I figured the rest of my life was mine. As if the tumors in my body had admitted defeat and would fade away.

My father, Tom, and Bethany stayed with me until the moment I went into the operating room, though I don’t remember that. Bethany said a minister had prayed with us, had prayed that everything was His Will and His Will would be the correct course, no matter what happened. She was angry at his easy release of my soul. She told me she wanted to say a prayer that would cancel out his prayer, but she felt she couldn’t pray fast enough. Instead, she simply prayed that I wouldn’t be able to hear him.

I’ve toyed with the idea that if the minister’s prayer had gone unsaid, had not allowed God to do what He wanted, that day would have been different. The towers would have remained standing; the tumor would have disappeared; the mountain would have moved. But I know how ridiculous that is—as if I, the about-to-be-God, would change my mind and hold back my Will just because of the absence of that prayer. Like my destiny to live with Ollier’s, no prayer would release anyone from that day. For that Tuesday had already begun. The tumor had been waiting for this moment since I was born. The planes were about to leave Earth.

Tom says I have a farmer’s sort of faith. I believe, but I don’t blindly depend on God’s grace. I still get up each day and plant my seed, plan for harvest, eye the sky for signs of rain.

Many Amish do not believe we can know whether we are destined for heaven until the moment of death. They aptly call it a “great hope.” The Great Hope that something larger waits beyond the horizon. It means you must live in the present, the physical world, and let that hope enrich your life rather than sustain it. Instead of something far-off and untouchable, the Great Hope sits bare-footed among us, searching for the flames of God.