Something was terribly wrong. My lower abdomen was swollen and sore. I had lost nearly ten pounds in the past two weeks. I could no longer keep my food down, and a screaming pain ripped through my vagina every time I peed. In order to keep this mysterious condition from my strict Mennonite missionary parents, I ran outside after almost every meal and vomited behind the hedge near the veranda of our house.
It was November of 1969. Just a few weeks earlier, I had graduated at the top of my high school class at the Liceo de San Carlos in Asunción, Paraguay. My life lay ahead of me like a shiny blank whiteboard, inviting me to imagine endless possibilities. Now, at home at my parents’ leprosy station for summer vacation, I felt only a dark cloud of pain and confusion.
Leprosy is a disease that begins as an invisible, imperceptible infection. It affects the nerves of the hands, feet, and eyes, and some of the nerves in the skin. In severe, untreated cases, loss of sensation, muscle paralysis of hands and feet, disfigurement, and blindness occur. Eventually the untreated disease dominates patients’ lives, leaving them crippled, grossly deformed, and socially cast out.
In the Bible, the word leprosy is mentioned over forty times. Ancient Israelites believed God inflicted the curse of leprosy on people for the sins they committed. Lepers were rejected and treated as outcasts. This persisted and was still the dominant practice in 1951 when the Mennonite Central Committee asked my folks to begin the leprosy work in Paraguay. Paraguayan lepers, if discovered, were locked up in a squalid, isolated colony called Santa Isabel in Sapucai, 100 kilometers southeast of Asunción, the capital city. They suffered under conditions that my Mennonite father’s people believed were unacceptable for any child of God.
In many ways, going to become medical missionaries in Paraguay felt like coming home for my folks. They were both born and raised on the plains of Kansas, descendants of persecuted Russian Mennonites who escaped to North America from Russia in the 1870s. Cast out for their pacifist beliefs. More Russian Mennonites migrated a few decades later, this time establishing colonies in South America. Upholding the same religious ideals and principles of non-conformity as their North-American counterparts, the Mennonites in Paraguay established farms, spoke Plautdietsch, the Low-German dialect of their ancestors, refused to join the military, and ran their own German schools. And their service orientation meant they were staunch supporters of my parents’ leprosy mission.
So that’s where my seven siblings and I grew up, in a Low-German Mennonite community committed to serving the sickest of the sick leprosy patients in Paraguay. After the age of 10, I lived with minimal supervision and attended school in Asunción. I hated that the Lord’s work always seemed to take precedence over us kids. I hated what I thought was mindless conformity of the Mennonites around me. Everyone dressed alike and insisted on speaking the native Plautdietsch, for the most part refusing to learn Paraguay’s official language, Spanish. But mostly, I hated the rules and the oppression. There were rules against so many things that seemed like they’d be fun. Tobacco. Alcohol. TV. Popular music. Daydreaming. Dancing. Kissing a boy. The Mennonite church maintained strict social compliance to the many rules of conduct. Those who sinned and weren’t sufficiently repentant were banned (excommunicated), cast out, or shunned and denied access to participation in the Gemeinde – the church community.
Terrified that I was dying, I took a bus into Asunción and checked myself into the Hospital Bautista. An overweight woman in a starched white uniform and a stiff nursing cap ushered me into an examination room. A strong smell of chemical disinfectants assaulted my senses. The nurse asked me to undress and pointed to the examining table.
“Please lie here and put your feet up in these stirrups,” she said.
I turned toward the door and shut my eyes tight when the doctor entered. “Let’s take a look,” he said, pulling up a stool and seating himself between my spread legs. He pushed my knees farther apart. My body began to shake and I let out a thin wail when his ice-cold instrument penetrated my burning vagina.
As abruptly as he had entered, the doctor left the room without a word. The overweight nurse asked me to get dressed. I sat in a chair, hunched over my aching body, and waited.
After what seemed like hours, the doctor called me into his little office cubicle. He settled into his chair across the desk from me, now wearing wire-rimmed spectacles I hadn’t noticed earlier. “Marlena, you are pregnant and I believe you have an advanced case of gonorrhea, although I am sending a specimen to the lab to confirm this. I am hospitalizing you until you are stable. You’re barely 18. I have to let your parents know. Please tell me who the father is of this baby, and how this happened.”
I stared at the rims of his spectacles. Gonorrhea? What was that? Pregnant? How could I be pregnant? Hans had promised me that we would never risk pregnancy.
I was lying in the hospital bed, an IV stuck in my arm, when Mom and Dad walked through the door. After a first glance, I turned my head toward the window. I couldn’t look them in the eyes. Mom’s face was puffy and red from crying and Dad’s eyes were clouded with fury.
“I…I’m…” My voice cracked.
“We spoke to the doctor. Get some sleep. We’ll be back tomorrow,” Dad said. They turned and walked out.
After my parents left, late in the evening when few people were around, Hans appeared in my semi-dark hospital room. His face was set in a severe grimace and his voice was flat and business-like. He stood beside my bed, but he didn’t look me in the eyes.
“I’ll pay for an abortion. I know someone who can take care of this.”
I heard a voice that sounded like a stranger’s from deep inside of me scream, “Get out of this room. Get away from me!”
As Hans strode out of the room, his words echoed in my head and I shuddered. An abortion? Only sinful women of the world do stuff like that, I thought. A broken sob caught in my throat when the realization hit me that night, lying alone in my hospital bed: I am one of those women.
After a few more tests that confirmed the gonorrhea, it turned out that I might also have a large tumor in my abdomen, requiring exploratory surgery after I regained sufficient strength. The doctor sent me home on antibiotics for a few weeks.
A strained and tense silence pervaded those two weeks at home at the leprosy station before the surgery. I wanted to ask Dad about the gonorrhea, but I didn’t dare. What was it? How did I get it? Why did I get it? I knew it had something to do with my affair with Hans, with the sex, but the doctor in Asunción had been vague about it. Finally, one afternoon when I was alone at home, I flipped through my father’s medical tomes on the bottom shelf of his office. There it was. Gonorrhea: An infection caused by a kind of bacteria that is passed during sexual contact. The infection is easily spread and occurs most often in people who have many sex partners.
Many sex partners? Many sex partners? I swallowed hard, closed the book, and sat back on my heels. Was it possible that I was only one of many? My stomach began to convulse and I ran outside to vomit.
One morning a few days later I overheard Dad’s long prayers, as he and Mom and my younger siblings sat around the breakfast table. I refused to sit at the table with them, and was squatting on the lowest step of the concrete stairs leading down from our veranda. It was still early morning, but the cicadas were chirring and the heat was already suffocating.
I heard him solemnly name the members of our family, beseeching the Lord to bestow health and blessings on each one. “Lord, we ask that Thou mightest richly bless …” He went from oldest to youngest, as was his custom. But he didn’t name me.
I huddled lower on the step, clasping both arms around my knees. When his prayer ended and they rose from the table, I ran to my room.
I lay on my bed with my hands on my belly. Certainly, I wasn’t someone who deserved the Lord’s blessing. But was I doubly cursed? Was there a baby in there as well as a cancerous growth? What would I do with this baby? What would I do if I had cancer? The questions were so overwhelming that I couldn’t focus my mind. For the first time I could remember, I had no plan to get out of the mess I had created. I turned over on the bed and pushed my face into the hard pillow.
Mom rapped on the door. When I said nothing and didn’t move, she came in. “Marlena, you need to eat something,” she said softly. “You need to build up your strength for the surgery.”
“I’m not hungry,” I mumbled into my pillow.
“Please, honey…” She began to cry, and left the room.
I just kept pushing my head against the hard pillow, my eyes pinched shut against the world. I hated that Mom was acting like nothing had happened. Like I should just sit down at the table with them and eat. Like this was a day like any other.
A week passed. I ate almost nothing, said almost nothing, and spent almost all of my time in my bedroom, trying to figure out what I could possibly do with my life.
One afternoon, there was a loud banging on my door. Dad walked briskly into the room.
“Get yourself out of that bed right now, Marlena. If you don’t want to eat, that’s fine, but you’re going to make yourself useful. Get out of here and start helping with the chores. Now.” His voice held a bitter edge.
“I’m not getting up,” I said, wishing even as I said it that I had said something else, anything else.
He grabbed my arm and pulled me off the bed, dragging me behind him, out onto the veranda.
“Let go of me,” I screamed.
My mother came out of the kitchen, her face drawn with concern.
“John…” her voice faded.
Still gripping my arm, Dad exploded into a sharp staccato. “There. Are. Plenty. Of. Other. Children. To. Love. I. Don’t. Need. You. I. Want. You. Out. Of. My. Life.” His nostrils spread wide and taut.
The weight of Paraguay’s late afternoon humid stifling November heat fell heavily on the three of us standing in an awkward semi-circle on the open veranda of our house. My light cotton shift dress stuck to my sticky sweaty skin. I glanced up from the floor and saw my mother’s stooped figure, her eyes turned down, her neck muscles pulsing. I looked back down and saw her toes, with those dirty unkempt toenails, moving in a nervous rhythm up and down in her flip-flops. Up and down. Up and down. No one said another word.
I started back toward the girls’ bedroom, fifteen or so meters toward the far end of the veranda. Halfway there, I felt the by now familiar heaving of my stomach and leaned over the banister to throw up. My entire body began to shake. Acid still stinging in my throat, I stumbled the rest of the way to the girls’ room.
I heard the kitchen door close. Was I supposed to pack a suitcase? But I had nowhere to go and no money to get me there and a baby and some sort of weird tumor in my belly. So I sat on the hard bed in my room and stared out the window until the final rays of sun vanished and welcomed darkness enveloped me. The cicadas’ songs outside my window were beginning to fade. I heard the clattering of dishes in the kitchen at the other end of the veranda, I smelled the familiar pungent smell of the kerosene lamps being lit, and I strained to hear the murmur of my parents’ voices. But they didn’t come for me, and I didn’t leave my room.
I did not move out, just made myself as invisible as I could, avoiding contact with my parents and my younger siblings as much as possible. The surgery date was still a week away. I hid out in my bedroom during most of that week. I refused to come to the table at mealtimes. For hours each day, I sat at the edge of my bed, my arms wrapped around my body, rocking back and forth, thinking about the mess I had made of things and wondering what was to become of my life.
The day of my surgery, Dad drove me to the hospital. His jaw was set. He said nothing.
“Dad, I’m scared,” I said, trying not to sound too desperate. “Someone is about to cut me open, and that really scares me. Can you please come with me into that operating room when he cuts me open?” Despite everything, my father was still a heroic doctor in my mind.
I saw him stiffen in the seat beside me. I waited, hardly breathing. Finally, he barely nodded.
My mother was sitting beside my hospital bed when I awoke from the anesthesia.
“Am I… was I…” I groaned. Pain washed over me and dragged me back deep into a blessed dark, empty place.
When I awoke the second time, the single burning question in my mind came together more clearly.
“No. You are not pregnant, Marlena,” Mom said, tears welling up in her eyes.
I touched my bandaged belly gingerly, carefully. There was no baby in there. I wasn’t pregnant. The thought that I might have had a cancerous tumor never occurred to me. All I could think about was that I wasn’t pregnant.
I drifted back to sleep.
“Marlena, the doctor wants to talk to you about the tumor.” Mom was gently tapping me on the shoulder to awaken me. “He’s here now.”
The surgeon pulled up a chair next to my bed.
“Marlena, here’s a photo of the mass we removed from your body.” He handed me three little black and white Polaroid photographs.
“It just looks like a big blob,” I said.
“Well, it’s more than just a blob. Look here. You can see a deformed head, bones, teeth, hair and fragments of a spine.”
My mouth fell open and I stared at my mother. “I thought you told me I wasn’t pregnant?” I cried out.
“Marlena, listen to me. You weren’t…you aren’t pregnant. This is not your baby. This is your twin.” I tried to interrupt him, but the doctor continued. “As far as we can tell, back when you and your twin were conceived, both of the fetuses shared the same placenta, but apparently you wrapped yourself around it and enveloped it. In response, it became a parasite by drawing on your blood supply. Its survival depended on your survival. It had no brain and lacked internal organs, so it was unable to survive on its own.”
“What are you talking about?” I didn’t understand.
“You carried your twin around in your abdomen, and until you reached puberty, it probably remained very small. Now at 18, it had squashed your stomach and intestines to where they could no longer hold down any food,” he said patiently.
I turned toward the wall. This can’t be happening to me, I thought. I’m not only a sinner. I’m a freak.
The surgeon cleared his throat. “I have something else I need to tell you…” he began.
“I have cancer,” I interrupted, almost matter-of-factly.
My mother rushed over to my side. “No you don’t, honey. No pregnancy. No cancer.” She took my hand in both of hers.
“The mass had wrapped itself around both of your ovaries, clinging to them for its survival. I had to remove your entire right ovary.”
I stared at him, not knowing what I was supposed to say about that.
He continued. “When I moved to the other side to cut out your left ovary, your father asked me to carve around it, removing what I had to, but leaving a tiny remaining portion of your left ovary intact.”
“So what are you saying?” This all seemed so strange. And besides, what I really wanted to concentrate on was that I wasn’t pregnant.
“I’m saying there’s probably not enough ovary there for you to ever get pregnant, but your father thought it might give you at least a chance.”
“Where’s Dad?” I asked, noticing for the first time that he wasn’t in the room.
“He had to return to the leprosy station to take care of a medical emergency, but he stayed with you all through the surgery,” Mom said.
I looked over at my mother, hunched beside my bed, still holding onto my hand, and then at the surgeon, wondering how I was supposed to react to the news about this twin and the whole ovary thing. I really didn’t want to think about any of it.
But that night, lying on my back alone in my hospital bed, images of my twin haunted my tortured still-sedated thoughts. Who were you? And why didn’t I even suspect you were there for all those years? Tears made tracks down both sides of my head, soaking into the pillow. And who decided which one of us should live, and which one should be cast out of this life?
Placing both hands over the bandages on my belly, I whispered, “I’m sorry.”
Marlena Fiol, PhD, is a freelance writer, certified tai chi instructor and spiritual seeker whose writing explores the depths of who we are and what’s possible in our lives. Her most recent essays have appeared or are forthcoming in GFT Press, Crux Magazine, The Manifest-Station and The Creative Truth. Marlena’s complete vita and a sampling of her body of publications on identity and learning are available at marlenafiol.com.
Thank you Marlena, for sharing this most personal and sensitive part of your life’s story. So wonderfully written, with such respect and regard for those involved, yet so frank about your own experience. I am richer for having read it.
Thank you, Lorna, for those very kind and thoughtful words. I am grateful if my experiences can be of value to others!
Oh Marlena what a very hard time for you and how difficult it must still be for you. You are such an inspiration to me. Sometime I will tell you about the relationship I had with my father. Some things we never forget.
Thanks, Susan. I’d love to hear about your relationship with your father. Actually, my father and I reconciled decades before his death, and we were very close. So when I write this now, I still have vivid memories of events, but very little of the raw pain of those years. The real story of my forthcoming memoir is reconciliation.
You are and you were so very brave. We are humbled by what you are sharing.
Thank you. I imagine we all have experiences we’d rather not share, but the potential learning from joint exploration of difficult issues makes it more than worth it.
I was very anxious when I started reading this as it almost sounded like my story. Yours had a better ending I wondered why you never mentioned the boyfriend again . it was great reading. Good luck on your journey will be looking forward to more of your writing.
Thank you, Linda. I’d love to hear more about your story. I believe we all have more in common with one another than we think. The boyfriend? He disappeared after I wouldn’t accept his offer of an abortion.