Tough Girls Wear Teal
FORWARD: TOUGH GIRL
When I was little, I took pride in being a “tough girl.” I didn’t flinch when nurses gave me shots. I didn’t cry when I scraped my knees. Doctors told me I had a high pain tolerance.
I had no idea, then, how that tolerance would be tested.
From the ages of sixteen to twenty-one, I learned that tough girls wear teal.
Because teal is the color that makes visible the struggles many do not see and that – for many years– I did not want others to see. I wear the teal awareness ribbon in honor of Polycystic Ovarian Syndrome Awareness Month each September, and for Post-Traumatic Stress Disorder Awareness and Education.
“Tough Girls Wear Teal” explores my journey through polycystic ovarian syndrome. As a woman with PCOS and PTSD, I know that those acronyms do not define me, but they are part of me and a part I refuse to hide. If my story helps one person, then I’ve given my pain purpose.
TO KISS A STRANGER
“You okay, Nashville?” the blond guy ahead of me asked as we hiked up the narrow, twisted staircase to the top of the Arc de Triomphe, my hand clutched to my chest.
“I’m fine, Boston,” I lied. “Keep climbing.”
As he walked behind me on the narrow, tight, twisting steps, he told me about how his friends had just gotten married in Paris. The groom was from Tennessee like me, the bride from Britain. They’d met on a trip to Iceland. He talked the whole way up, assuring me if I passed out he would catch me. I didn’t respond. Couldn’t spare the breath.
My travel companion, a mother from Kansas named Cathy, said that Boston was definitely flirting with me, but the more I felt I might pass out, the less I cared. We got to the top of the Arc and lost Boston in the crowd. I looked out from behind a protective, diamond-patterned fence that kept dizzy tourists from tumbling over the edge. The night-lit streets of Paris stretched out from the Arc in different directions like the spokes of a wheel. Headlights and streetlights swam before my eyes. I sat down and put my head to my knees for several minutes, trying to center my senses.
A pair of security guards asked in both English and French if I was alright. I pointed to my medical bracelet, explaining in French that I just felt a bit ill. I asked if I could use the elevator reserved for those in need. I must have looked sufficiently sick, because the security guards agreed without hesitation.
I was grateful they didn’t ask me to explain my condition. It’s hard enough to do so in English, but I’ll do my best.
Polycystic ovarian syndrome (PCOS) is a hormonal imbalance found in an estimated 10% of women. While all of us with PCOS tend to share certain commonalities, the exact nature of the condition impacts every woman differently. For me, PCOS divided my life into three phases: Before the Pain, During, and After. This trip to France came in the “After” phase.
Almost two years after my hysterectomy, I dared to make my first trip overseas. No friends. No family. Just me and the members of my travel group, among whom I didn’t know a soul before arriving. I was the only one in the group that spoke French having minored in it during college. As Cathy and I headed toward the Arc’s elevator, my headache intensified, pressure tightening around my skull making it hard to think in English let alone my foreign tongue.
We used the elevator to descend the Arc, then wandered the sidewalks just long enough to find an overpriced restaurant on the Champs-Élysées. We took a seat by the door, feeling the breeze of a cool autumn night every time it opened to admit new customers or a server attending to the people seated outside. Outside, people sat at small round tables. Couples and friends spoke to each other, their hands wrapped around coffee cups while single occupants spoke with cellphones in one hand, cigarettes in the other.
I rested my head on my arms, watching the blurry figures of other tourists stopping to take selfies in front of famous stores or update their Instagrams with “Café en Paris” captions. My limbs shook as my blood sugar continued to drop. I stayed silent, lacking the energy for conversation in English or French. Cathy struggled to make the waiter understand the need for me to eat soon. She used the words “blood sugar” and he brought us packets of “sucre.” After half an hour of waiting, I got fed up and announced, in French, that I felt sick. The server brought us our meals within minutes, eager to rush us out. Better I vomit on the road than inside.
I picked at my expensive salad, managing to down a few bites. This gave me the strength to stumble down the sidewalks and onto the metro. Recalling how my best friend had been pickpocketed on the Paris subway on her own trip years ago, I kept my crossbody bag close to me under my black winter coat the entire way back to the hotel. I sat on a small, plastic vinyl seat in the subway car, gripping the pole between myself and Cathy with my bag-free hand. My grasp tightened as the car surged through tunnels and whipped around corners, jostling us back and forth, back and forth. We arrived in Vaugirard in the 15th arrondissement a few minutes later where I managed the short walk back to our hotel, moved slowly up the steps to my room, fumbled with my keys, then sat on the edge of my bed until the room stopped spinning. When the dizziness faded, I dug some crackers out of my suitcase, took my evening medication with a bit of water, and changed out of my germy street clothes.
Paris isn’t so romantic, I thought as I laid down in bed, listening to the sounds of Parisians passing on the street below my window. Everyone looks to Paris as a center of romance. Fancy travel magazines won’t tell you about the overflowing trashcans, the dirty streets, or the rudeness some Parisians show whether you speak English or French to them. But as I recalled how the Eiffel Tower lit up at night, sparkling as if pixie dust danced across the woven iron, I understood how people fall in love in the City of Lights.
It’s not about the city. It’s not about the magic of electric lights on a famous landmark. It’s that when you’re abroad, you are so far removed from your typical life that you can, for a moment, see yourself from the outside. In that moment of clarity, you understand yourself better than ever before.
You are your truest self and the intensity of that insight and that joy swells to the point you want to embrace the person beside you and shout that it’s great to be alive! And isn’t it wonderful that we’re here, right here, right now, in this place, being our best selves and living so completely in this moment?! It’s a feeling strong enough to make you kiss a stranger. To live wholly in the now. To make you almost forget who you were before.
There are only a few details that remain clear in my mind about the summer before high school. If I were to try to describe the hospital, I would speak of green and white tiled floors under florescent lights and the sounds of nurses and doctors being paged, wheelchairs rolling down the hallways, and people talking on their phones. I would describe stiff plastic chairs, old magazines, and toys for toddlers scattered about the waiting room. But this could be a memory from another hospital at another time in my life. Or perhaps the many have morphed together into a single place in my mind.
What I do remember clearly is this: the moment, at fourteen years old, that I locked eyes with another girl my age in the waiting room of the research hospital. Her head was bald, her figure frail. I recognized the signs of cancer treatment. Seeing that girl intensified my fear and confusion. What kind of condition were they testing me for that required me to share a room with cancer patients? Did I have cancer? Was I going to go have to quit school? Seek treatment? Was I going to die?
No one told me anything. The nurse simply called my name, took my weight, my height, and drew my blood. The doctors spoke only to my parents. A small gang of medical students followed behind the doctor, peering at me through glasses and scribbling notes down as the nurse drew more blood.
I don’t recall the exact words exchanged between the doctor and my parents. There was a mention of running more tests, eliminating the worst-case scenarios first.
No one asked how I felt about more testing, more hospital visits, or seeing doctor after doctor and getting no answers. Finally, my mom wrote a handwritten letter and faxed it to the endocrinologist who had helped my great-grandmother years before. The endocrinologist offered to see me right away.
She diagnosed me with polycystic ovarian syndrome. PCOS. Three words, four letters that marked a new phase in my life, starting that very day.
On my endocrinologist’s suggestion to cut processed foods from my diet, Mom purged all junk food from our kitchen in a single obsessive frenzy. Goodbye, Little Debbie, Chef Boyardee, and Kool-Aid Guy. Goodbye, childhood.
When girls in my freshman classes would ask if I had a pad or tampon to spare, I lied, saying I must have left them in another bag. I didn’t have any pads anywhere. Despite starting high school, I still hadn’t started my period. My new prescriptions had cleared most of my acne and suppressed the excess testosterone my body produced. A classmate remarked on how skinny I’d become as we changed into our gym clothes before P.E. My new healthy diet had reduced my clothing size over the summer, eliminating my baby fat. The laser hair removal surgeries my endocrinologist recommended did away with the darker body hair that testified to my being different from other girls.
As a victim of childhood bullying and someone deeply ashamed of my disease, I was determined not to give my classmates a single reason to target me or to isolate me further. I ran through a mental checklist countless times a day, ensuring I controlled everything from how I dressed, walked, talked and sat to the way I folded my hands.
By junior year, I learned to dress fashionably, wearing scarves as belts to add some hint of femininity to the polo shirts and stiff finger-tip-length skirts of my public school uniform. I matched each accessory with careful attention. I tried new types of makeup each school year, learning to wear eyeshadow, eyeliner, mascara, and rouge. At the age of sixteen, I finally felt I was truly normal. I had everything I believed necessary at that age. My period finally came. I had my driver’s license, my first car, first kiss, first boyfriend, first breakup. I felt wonderfully, extraordinarily typical.
But sometimes, someone made the effort to make me feel alone.
“You’re pregnant with an alien baby,” he’d say. “That’s why you’re moody today. The alien baby is messing with your brain.”
I didn't know then there would be no babies for me.
So I laughed. I laughed at his bizarre, stupid joke.
Our attempt at dating was clumsy and confused. He was my friend and I was his, long before we attached the words "boy" or "girl" to the front of the noun. We held hands at a handful of football games. We kissed goodbye at the end of the school day and went on a single date walking around town. He never called over Christmas break, and I considered that the end of things.
We tried to go back to being friends after the short-lived experiment in romance failed, but there was a new tension between us. An unspoken anger at his immaturity, and at my expectations. That tension remained unacknowledged until our senior year. In the weeks before graduation, perhaps he felt the need to get it off his chest before we went our separate ways forever.
"You'll be a librarian with sixty cats and a house full of books," he said in class as a small group of us discussed plans for college and life.
I tried to laugh at this joke. Tried to play off the passive-aggressive nature of it.
I tried to laugh. The pain made it hard. Lately, my periods had become more frequent, more painful, more unpredictable. I found myself falling asleep as soon as I got home after school, waking for dinner, and going to bed again a few hours later.
Some of our friends laughed half-heartedly, but I think they, too, understood he wasn’t joking when he said the words that would stick with me for years after:
You’re going to die alone.
Better to be alone than with you.
As always, the comeback came to me later, when I was alone and his words echoed in my mind.
TUNE IT OUT
In college, my whole world narrowed down to constant, blaring pain. Doctors’ appointments filled my calendar. Not social events. Not dates. I saw multiple specialists, all of whom struggled to make sense of the pain– the pain that made it hard to sit on the metal chairs of my college classrooms without biting my lip to keep from screaming. I had no energy to pursue friendships. No patience to entertain thoughts of romance. Only enough energy to get to class, do my school work, see my doctors, and sleep.
The more I tried to hide my pain, the more of myself disappeared. Processed foods and social anxiety deterred me from using the cafeteria. When I remembered the need for food, I ate protein bars on the way to class or yogurt alone in my car, downing an ibuprofen in a failed attempt to dull the pain.
I didn’t mean to lose so much weight. I failed to notice my figure as other parts of my body demanded my focus. It was not until I looked in the bathroom mirror one night on a family trip to the mountains that I noticed. The dark rings around my eyes were familiar. The pale, sickly complexion nothing new. But I when had I become so thin? I took in the sharp angles of my hips and the crescent outlines of my ribcage. I quickly threw on my shirt, careful to change in the bathroom the remainder of the trip so my mother wouldn’t see how little of me remained.
I moved back home after one semester in East Tennessee, transferring to a Christian college in Nashville so I could be closer to my doctors and rely on my family for help on the days it hurt too much to drive, to go out, to do anything other than lie in my bed. I slept in my childhood bedroom again, crawling under the blankets to try to hide from the monster inside my own body. The pain tore at me inside and out and sent distress calls raging through my mind night and day. Trying to ignore it was like trying to tune out someone yelling in my ear with a megaphone. The pain made me testy. Impatient. Quick to lash out.
One day, I sat doing my homework in the Student Center at my new school. I kept my homework spread out on the table, eyes trained on my textbook, which I held in front of me like a shield. I hoped that by looking busy others would give me the space I needed to think over those loud, incessant distress calls screaming in my brain. Stay back, I thought at the people who passed too closely. One guy didn’t get the message.
I glanced up to see a boy I recognized from orientation. He stood slightly stooped with his backpack slung over one shoulder, the other strap dangling loose on the other side.
“Hi,” I said, looking back at my book. He told me his name. I didn’t have the focus or courtesy to remember it.
“We met the first day of school.”
I tried to force a smile. “I know. Nice to see you again.”
I kept doing my homework, trying to burn a message into his brain telepathically. Leave. Me. Alone.
“Anyway…” he said after several seconds of silence. “I just thought I’d say hello. You…looked like you might be lonely.”
“Well, thanks. But I’m fine.”
“O…kay. See you around.”
When he left, I breathed a sigh of relief, grateful I didn’t have to pretend that everything was okay as another round of pain clawed at me. My nails bit into the folds of my dress as I struggled to get a grip. I waited a minute before gathering up my things and heading to my car, ready to be done with this day.
Somewhere in my splintering mind I knew I didn't hate my parents, despite what I said when I called my mother at her work, screaming and sobbing into the phone. I didn't hate them. But I wanted to. Someone had to be at fault for giving me these damned, damaged genes.
I was nineteen when I swore I would never have biological children. I was alone in the house, finally free to scream and sob as loud and long as I wanted. I punched a wall, but the pain in my hand did nothing to detract from the ever-present pain below my waist. I found a small blue vase on my desk and threw it against the wall. It failed to shatter. It only cracked.
What had I done to deserve this? I hated my body. It was a prison. It had betrayed me. It rejected every medication I tried, every appeal I made. I swore right then that even if I was cured someday, I would never, ever have biological children. I would not put my body through the complications of trying to conceive, something I knew to be a challenge even for women whose PCOS was well-managed. And I would die before I would risk passing on my body’s particular brand of hell to my daughter. No child would ever suffer because of some selfish desire to see my physical traits live on.
This resolve is one I never wavered in, but it offered no comfort or assurance. It offered no answers for why I had to suffer.
I searched for answers from doctors. Mom searched for answers online. She would Google search late into the night, reading until her eyes turned red, looking for answers to the questions we didn’t even know to ask. My father drove me to school on days the pain was particularly intense. We kept as many details from my younger brother as we could, not that there were many to share.
Still no answers.
No resolve left to erode.
I told my parents I wanted to die. My quality of life was no life worth living. They told me how heartbroken that would leave them, adding guilt to the long list of other emotions that followed me like shadows. They told me to hold on. It will get better, they said. We’ll find a cure.
I didn’t believe them.
DON’T KILL THE DOCTOR
I sat in the OBGYN’s office for the third time in the same week, staring up at the tiled ceiling, counting the number of dots on the tiles as I waited and waited for the doctor. When she finally came, she knocked on the door, as if my frequency here had somehow made the space my own. I leaned back, held my breath, and tried not to scream as her cold tools prodded my damaged skin, dialing up the volume on my body’s distress calls.
“Believe it or not, Lauren, you’re looking much better,” she said. “The cream really helped. All the blisters are gone.”
Then why does it still hurt like hell?
When I told her I was still in pain and asked if there was anything left to try, the gynecologist appeared torn between pity for me and the desire to throw her hands up and walk from the room.
“We’ve tried almost everything I can think of.”
I bit back the urge to both scream and sob.
She saw the tears in my eyes. “Oh, Lauren. Don’t cry. You will get better. Why are crying? Because you can’t have sex? Are you afraid you’ll never get a boyfriend?”
I held my breath.
Only one thought crossed my mind:
Are you fucking serious?
The pain that kept me up every night, that kept me confined to my room for weeks at a time, that stole so much of me and from me, might continue indefinitely without a name or hope of a cure. I might live with this pain until the day I died. My mind struggled to process how I could go on living that way, fighting the agony every instant from this moment forward. I would have given anything just to have one pain-free day. To sit in class, or go out for a few hours, or have a conversation with someone without the pain stealing half of my focus. Dating was the least of my concerns. Romance was inconceivable. Her words sparked anger I didn’t know I had the energy to feel. Rage burned in my throat, but I couldn’t find the words to respond.
She smiled at me. “Don’t worry, Lauren. We’ll get you better one of these days. And you’ll get married and have babies just like every other woman here.”
Horrified into silence and desperate to get away, I nodded, got dressed, and left.
Needless to say, I found a different doctor after that. I started seeing the OBGYN that had delivered me twenty years earlier. He worked with my endocrinologist and together they linked the symptoms of my pain and infections back to my PCOS. What others had considered an unnamed autoimmune condition was really a lack of sufficient estrogen in my body. With a level, daily dose of estrogen, my soreness lessened and my hormone levels stabilized.
In the coming months, I made progress. Some days, the pain receded to the background, even granting me some moments of peace. But it came back hungrier for my attention than before. My periods went out of control. The summer before my last semester of college, I bled for ten consecutive weeks.
The pain clawed at me from the inside, just below my navel, demanding more of my blood, more of my time, more of my mind, more of myself. No form of birth control helped to stop the bleeding. For two months I bled without end. I begged my doctors for a hysterectomy. My doctors had turned down this request before, reminding that I would never be able to have babies, that I was too young to make such an irreversible decision. This time, they agreed with me.
AFRAID OF THE DARK
“Do you smoke?”
Check the box labeled “No.”
“Do you drink?”
“Do you have suicidal thoughts or tendencies?”
That was the one place I lied on my hospital admission forms. I never admitted to researching methods for how to end my life and my chronic pain.
What’s the most painless way to go? Where do we go after we die?
At twenty-one years old, I still had dreams I wanted to live for. But in my darkest moments, which lasted longer every day, I wanted the pain to stop more than I wanted those dreams. After five years, it seemed the pain was a permanent part of me. Constant, relentless. I needed an end in sight. I didn’t need more counselors who couldn’t help me, who told me to take more medicines, as if I would find happiness or relief in one of those pills. I’d tried pain medications. They only made me vomit, constricted my throat, cut off my air.
Maybe a few too many of my pills could end me, I thought. I could even make it look like an accident. I had so many medications. Half a dozen, sometimes more. Spironolactone. Probiotics. Antihistamines. Vitamin D. Nortriptyline. Birth control. Daily doses of ibuprofen. I even had opioids stored in the medicine cabinet, though I never used them. I knew they would offer no relief from my pain when taken as directed. But a simple miscalculation, a bad reaction to a combination, an accidental overdose and this could all be over. But I still had the hysterectomy ahead. One more surgery to try.
The day of surgery, I sat in the hospital bed studying the small, purple snowflakes on my thin gown. This would be my third surgery in three years. But this one was different. My others had been tests and observations and a small surgery aimed at helping with treatment. A hysterectomy, even a laparoscopic one, would require several weeks of bedrest, months of low activity, and my energy could take longer than that to bounce back. Not that I’d had much energy the last few years. The length of the recovery didn’t bother me. However bad recovery might be, I doubted it could be worse than what I’d already endured.
Despite my familiarity with surgeries in recent years, one thing never changed. I hated anesthetic. I hated the blackness that swallowed me against my will. I feared it might consume me, dragging me into a permanent state of darkness.
In front of my parents, I tried to maintain an appearance of calm as one by one the team of doctors and nurses and medical professionals that would take part in my surgery came to my room. They introduced themselves and told me who they were and what they did. I lost count of how many came in. I tried to mask my fear, but as the anesthesiologist connected me to the heart monitor, the machinery gave me away.
“Are you nervous?” he asked. He was a shorter man. Blue scrubs, blue eyes, and reddish blond hair. He didn’t seem much older than me. That didn’t set me at ease. Had he done this before? How many times? Did I really want to know?
I shrugged my shoulders. My mom and dad sat beside my hospital bed. What could I say with them present?
I couldn’t look the anesthesiologist in the eyes. Instead, I studied the simple gold cross he wore around his neck. I wondered how he could be a person of medicine and faith. How did he see people suffering in this hospital every day and still believe in a loving, active metaphysical power?
I’d stopped going to church some years back. It hurt me to sit on the hard pews on Sunday mornings. It also hurt me to hear sermons on how God answers prayers. How God heals the sick. How God has a purpose for our lives.
I could not believe that a loving God would put me through years of agony as some sort of trial or test or way of molding me. I wasn’t sure, in those moments before surgery, that I believed in God at all. But, as the fear of final darkness crept over me, I found I desperately wanted to believe. I said a small prayer to survive the day. I didn’t expect some magical cure. I didn’t expect to wake up and find all my pain and suffering gone as if it never existed. That had never happened before. It wouldn’t happen now. But I was okay with that. I didn’t mind fighting for my health or fighting for my future, just as long as I had hope that fight wouldn’t be in vain.
Later, as I lay in the recovery wing, I longed to still be unaware, or wrapped in the calming haze the drugs had forced on me as I was wheeled towards surgery. Instead, as I’d feared, I was drowning in darkness. I was aware, yet unable to swim to the surface of consciousness. My eyes remained shut as if weights pressed against them, and I told my body to move, but it wouldn’t listen or couldn’t respond, still arrested by the anesthesia. But I could hear. The words seemed amplified in the darkness.
“She’s twenty-one,” a woman said. “She’s only twenty-one. And she had a hysterectomy. Can you believe that? Poor baby.”
The nurses were talking about me. One nurse at least. She kept on talking. Did she know I could hear her?
Eventually, my anger gave me the strength to open my eyes, to assert my presence as best I could.
“Oh! You’re awake,” another nurse said as she made her rounds. It took several minutes for my vision to clear enough to make out my surroundings. I was in a recovery wing. I felt numb except for the extreme urge to pee.
“You probably have to go to the bathroom, don’t you?” The nurse in front of me laughed, not bothering to help me as I slowly sat up. Immediately I felt the stitches in my abdomen tug in protest. I hissed. I’ve faced worse, I reminded myself.
Slowly, so slowly… I shifted until my feet touched the floor. Blue circulation socks guarded my feet against the cold of the tiles. My legs wobbled beneath me as I managed a few shaky steps to the bathroom. That’s where I saw the bandages under my hospital gown for the first time. Dried blood had soaked through leaving the coverings brown and red. I didn’t want to see them, but I really didn’t want to see what hid underneath the bandages.
When I came out of the bathroom, Chatty Nurse was talking about me again. I laid back down in my bed. Eventually a team came to wheel me to my recovery room. Chatty followed us to my room, jabbering all the way. She kept telling anyone who would listen about how young I was and what kind of surgery I had. My vision was still too blurry to make out her features. I couldn’t read her ID to report her name later. She talked as if I was not conscious. As if I could not understand her. As if I was a dog or an animal who couldn’t process the words. As if I was not a person. Not a woman. Something else. Something ‘other.’
I had never questioned my resolve not to procreate, but I had kept silent about my surgery, telling only my immediate family and closest friend the specifics of the procedure. I didn’t want others to look at me with pity or judgment.
The nurse’s words confirmed all the things I feared I would hear from others, later. The words the demons in my own head whispered: What are you now? A broken container. Like the vase I hurled at the wall when I was nineteen, when the pain and anger spiked. Like the vase, I could never be perfectly repaired. I would always show cracks, symbols of my brokenness.
They wheeled me up to a room in a hall covered with photos of pregnant women, newborns, and babies cradled in their parents’ arms. My picture might have been there somewhere, a newborn little girl born in that same wing of that same hospital twenty-one years before. In that moment, I was a woman without a womb left to heal in the former delivery wing.
That night, I resisted the urge to call out when the night nurses ignored me no matter how many times I buzzed for them. I resisted the urge to scream as pain, an inability to move, and the extreme urge to pee strained my focus.
I fought the urge to push the off-white plastic button that would flood morphine into my system. I didn’t want it. I would use as little of it as I could stand. Because I’d faced worse pain than this. This was healing pain. My body’s last battle. Six months of recovery was nothing compared to five years of hell.
I looked into my bathroom mirror, holding my lifted shirt in one hand and wiping my eyes with the other. The mirror reflected four crimson, horizontal marks along my abdomen. I shouldn’t cry over this, I thought. After refusing to cry over so many other things, why should these four ugly marks earn my tears?
“They’re not hideous,” my mother said. “They’ll heal.”
I shook my head. “What will I tell people?”
Mom looked me in the eyes. It was a hard look. Determined. One I hadn’t seen from her in years. “You tell them that these are your battle scars. They prove you are strong. You survived. And you should never, ever be ashamed of them. If anyone has a problem with that, you tell them to go to hell.”
TODAY I WORE SHOES
For the first week after surgery, I had no need to wear shoes. I wore socks and pajamas and bathrobes. That’s all I needed to shuffle from my bedroom to the hallway bathroom and back.
On the day of my one week post-op visit, I laced up my tennis shoes and put on real clothes (meaning sweatpants) for the first time in seven days. Even the simple trip down the stairs, to the car, and then from the car to the gynecologist’s office on the first floor of the building, exhausted me. My abdomen still felt sore, but the pain was a dull sort of ache. My legs shook from lack of use.
The doctor said everything was healing nicely. Then he wished me a Merry Christmas and sent me on my way.
I walked back to the car the same way I had walked into the building.
I took one careful step at a time. I took each step alone. It was a small victory. And I was proud.
Even years after my hysterectomy– years after the pain finally, mercifully came to an end, I feel an occasional ghostly ache. Is it the scar tissue? Or simply my body’s memory of the pain? It’s fear I can feel in my skin. A small moment of intensity before my body rejects the sensation, banishing that pain to the past.
Even as my body healed, my mind remained broken. What would happen if the pain returned? After five years, could I trust that the pain was really gone?
The darkness that dragged me under when under the knife followed me throughout my recovery. Fear latched on to my weary mind, asking the same questions over and over again. Thoughts became obsessions– a mental broken record played to the point that the words would distort. I grew weary of listening, of wracking my brain for answers I didn’t have. With nothing to do but stay in the house, I began searching for answers online.
What was the point of my suffering?
If I had died in surgery, would my soul have gone elsewhere? Do we have souls? What proof is there? How could I trust what was real?
I craved facts. Validation. I found accounts of Near Death Experiences. I became obsessed with reading stories of encounters with the Other Side. Stories of ghosts and angels and people coming back after their hearts had stopped. I searched for answers into the early morning hours, desperate to come to a final conclusion. I woke up after just a few hours of sleep to fulfill the addiction, digging through forums and consuming library books on anything related to life after death. I looked for credibility in the authors, consistencies in the stories, but other people’s faith and experiences couldn’t substitute my own.
I fell into a deep depression. Even as my body healed, my mind remained broken, stuck in a relentless loop. At my parents’ insistence, I started seeing a counselor.
Shelby was a small, middle-aged woman with short black hair who specialized in trauma therapy. In our first session, she had me give my life’s story up to that point. After listening to what I’d been through and how my thoughts played in a loop, Shelby diagnosed me with post traumatic stress disorder (PTSD).
She explained that my anxiety causes me to experience certain memories as if they are present threats. It wasn’t just the darkness or fear of pain that haunted me. Reminders of every stupid thing I’d ever said and every embarrassing situation kept me in a constant state of caution. If confronted with speaking to a group of strangers my age, especially girls, I would flashback to whatever memories of bullying or isolation my mind could dredge up. I would think, Don’t say anything stupid like that time in fifth grade when you said you played video games for fun and all the girls in your class called you weird and made you eat lunch alone. Don’t speak unless spoken to or they’ll think you’re rude and annoying.
I went to counseling once a week to do EMDR and talk therapy. For one hour every Thursday afternoon I would sit on a couch in a small, dimly-lit room across from where Shelby sat in an armchair with pad and pen.
We decided to try auditory EMDR to help me process my memories in a healthy way.
At first, I stared at the headphones and cassette player placed in my hands.
My first thought:
It was 2014, so who the heck still owned, let alone used cassettes?
My second thought:
How was listening to a tape going to fix my broken brain?
Still I decided to give it a try. I placed one the big, retro headphones over my ears. A soft, slow beep sounded in my left ear, then my right in steady time while my counselor talked me through summoning up the painful memory. She had me voice the thoughts associated with it. Summon them. Feel them. Hold them tight. Then let them go. Let the memory slip beneath the surface of consciousness.
Finally, the broken record stopped.
That is not to say I left my sessions with every answer figured out.
Shelby encouraged me to look for answers to my questions out in the world. Visit churches. Temples. Go outside and walk.
My legs were weak from months of not leaving the house. My breathing had become ragged from months of inactivity. But day by day I built back my strength. The rhythm of my steps helped to rebalance my body and my mind.
I asked questions. I found answers.
I’m not done asking, seeking, or finding.
A small golden tin with pink, white, and black patterns across the top. A faux-leather blue and white striped container that fits in the palm of my hand. A forced smile. A laugh. There are so many ways to disguise disease. Taking pills in others’ company makes masking it harder.
Sometimes, if my friends are aware I take prescriptions, I might discreetly slide my pill case into my hand beneath the table at lunch, and quickly place the pill between my lips the way one might a breath mint. Sometimes this still earns stares. Even when they know my medical history, the sight of a twenty-something popping a pill in public strikes them as strange.
Sometimes I slip off to the bathroom or wait until I get in my car. Then I open the small square container labeled with a letter like ‘M’, ‘T’, or ‘S.’
My medicines are as much daily routine to me as brushing my teeth or changing my clothes. But for some observers, my pills stir thoughts that I am not the normal, healthy girl I appear. There’s something in me that is different. A defect that the pills have to mend.
I see all of this on friend’s face as I catch his eye and he quickly looks away, or a woman’s stare as she enters the ladies’ room to find me downing a pill with a sip of water from the tap. Most of the time, I shrug these looks off and go on with my day.
Sometimes, though, these looks remind me of the conditions that will always live inside me. Sometimes another trigger reminds me how I’m different. When a documentary’s graphic images of sexual trauma trigger a panic attack. When I see a person from my past unexpectedly, and the words come flooding back to me:
You’re going to die alone. You’re broken, broken, broken.
A broken record playing in my mind.
But I know how to shut it off now. My disease does not define me and it does not control me.
I have been pain free for three years. I still struggle with knowing how to navigate certain situations. How transparent should I be? I have written publically about my past. I’ve discussed it with perfect strangers as if remarking on the weather. But other times, I hold it close. Is there ever a right time to tell someone you’re dating that you can’t have kids? The last thing I want to be is a burden. And I fight the urge to say “I’m sorry.” Because I know I shouldn’t apologize for a disease I didn’t cause. I know that every tough decision I made ultimately gave me my life back. A life free from chronic pain. A life where I can laugh. I can smile. A life with purpose and moments of pure, transparent joy.
Ren Ellis is a dress-wearing tea-drinker whose active daydreams serve her well as a writer. When residing in the real world, she lives in her hometown of Nashville, TN juggling life as a content writer, blogger, and MFA candidate in Creative Writing at a southern university. Find her at RenEllis.me