Mom has a picture of me in an album where I’m standing in front of our 1990s floral-patterned deck furniture. I’m wearing a Donald Duck t-shirt with big blue letters that declare “I’M THE BOSS.” Posing for the photo, my 8-year-old self has her hands on her hips, her blonde, bobbed hair framing a mischievous gleam in her eye. I was ready for anything.
But wanting your head to explode like an over-stuffed crème puff so the pain will stop is not an experience for which you can ever be ready.
* * *
My headaches began on a Wednesday, the day of the week Mom made Rebekah and me help clean house. Mom’s Martha-Stewart ambition was that everything be cleaned, tidied, and fluffed. Rebekah and I only did what she forced us to and tried to stay out of the way. I remember we scrubbed our frilly blue-curtained shower together, but then Rebekah got to vacuum the carpet, and I was jealous of her Lizzie-Mcguire-older-sister superiority. I had to dust the plaid couches and other furniture while Mom mopped the blue and pink, diamond linoleum.
I could smell the orange oil I was using to dust on one of Dad’s cut-up shirts as I walked into the kitchen to wipe the edges of Mom’s china hutch. I knew the exact one or two spots on the hutch that I had to make sure were clean enough to pass inspection. No way would I bother to lift any of the framed family pictures to dust behind or underneath them. I was always a rebel when it came to chores.
As I reached out to wipe the microscopic gray flecks from the wooden corner of the hutch, I staggered. The pain must have been building for some time, but in that moment it became too much to deny. My forehead and temples felt like molten metal was pumping into them. The doctors asked me later if the pain was sharp like a hammer or dull like a weight crushing my head. My headaches weren’t like either – they were sharp like the burning of hot metal behind my eyes and dull like liquid building to a pressure inside my head and trying to burst out my ears if I tilted my head to the side. I’m not sure I ever got a doctor to understand that; they always wanted the pain to be either a hammer or a weight.
I crumpled in front of the hutch, clenching Dad’s old shirt in my hand. After a few moments, the circles of pain lessened enough so that I could walk again. I found Mom in the back of the house, mopping the laundry room linoleum, her hair pulled back into a ponytail and swishing with the rhythm of the green mop handle. “Mom,” my high voice cracked as I spoke the word and tried to swallow the scent of the Armstrong vinyl floor cleaner.
“Yeah, Elizabeth,” she replied, scrubbing at the floor.
“Can I have some Tylenol? My head hurts.” Mom looked up at me. The crème puff filling was starting to catch fire and boil over inside my head.
“I’ll get you some,” she said. “You can finish mopping this last corner for me.” Mom handed me the mop handle as she walked past. The mop was just a painted stick with a metal clamp on the end holding a ragged towel. I have never seen another mop like it. I pushed the towel a full six inches across the floor before I propped it against the wall and followed Mom to the living room.
Landing on the couch, I waited while she got the Tylenol. “How bad does it hurt?” Mom asked me, surprised I hadn’t finished the mopping. I couldn’t answer, but the tears cracking out of my eyes told her all she needed to know. She managed to get me to swallow the Tylenol through the salty taste in my mouth. Then she sat on the couch next to me and I laid my head in her lap. As she petted my hair, the pain quieted for a moment. The only noises were the pop of the fire in the wood stove and the revving little-brother sounds 4-year-old David was making as he played with toy backhoes in his room.
But the pain came back with the persistence of a hit-man. I almost didn’t make it to the kitchen sink before I vomited. Mom held my hair out of the way as my body heaved. I stared as tears mixed with the vomit in the sink. I wanted my head to vomit out the pain like my stomach had vomited out breakfast. Grabbing the mixing bowl from a lower cabinet as insurance, Mom carried me to my bed.
When I awoke, I felt normal. I could hear laughter coming from the kitchen. I decided I would never experience pain like that again and got up for dinner wearing my “I’M THE BOSS” t-shirt.
* * *
I never told my parents about the gooey, dream experience of the neon mosh pit night. I stared at the yellow walls of my bedroom as scruffy sleep began to cover my mind. During the day, sunlight reflected off the paint, brightening it to a smooth, baby yellow, but as I fell asleep, darkness drained away the color. Noncommittal shades of gray killed the once lively paint. I lay on the bottom bunk of mine and Rebekah’s bed and stared at the walls with the blue, daisy-covered comforter tucked underneath my chin. I listened to Rebekah’s steady breathing; she has always slept like a baby log. My mind molded the texture of the walls into a thousand shapes. A bunny rabbit hopped just in front of my nose, an amoeba swam above my right hand, and a penguin waddled in the light of my glow-in-the-dark star stickers.
Then I saw a flash of light, orange and yellow, as though David, in one of his Tasmanian-Devil-like attacks, had shined a strobe light right into my sleepy eyes. A noise, like an ant must hear just before a semi-truck crushes it, vibrated through my head. Another flash, this one the purple color of pleather disco pants, danced across my eyes. The buzzing scream of a crowd at a theme park forced my fingers into my ears. Flashes rolled over me faster now, more than one at a time, all different colors. I constricted into the fetal position in the center of a neon mosh-pit. But I was eight years old, lying in my bed, my sister smacking her lips in contented sleep above me. Each muscle of my body rippled with the pulse of the noise and the blaze of the lights. I squeezed my fingers further into my ears and tried to seal my eyelids shut. Tears broke them open.
* * *
I couldn’t hide the headaches like I hid the mosh-pit night. The headaches latched onto my brain eleven more times over the month of January 2004. By the third or fourth time, the tears started as soon as I felt the pain coming. The intensity of the molten metal inside my head would build until it made me vomit, and then I would be able to sleep.
A couple of weeks after the headaches began, Mom penciled in an appointment for me with our family doctor, Dr. Weber. We had been friends with the Weber family for as long as I could remember. They had a daughter named Rebekah who is the same age as our Rebekah. They also had a son named Brandon who was my first crush. At the time, I thought the ability to do a backflip on gymnastic rings in the backyard was all that mattered for a lifetime of love.
One afternoon, we had been playing in the Weber’s crabapple tree. I was eating the sour-as-death crabapples, mostly because Mom had told me they were not edible. Brandon and I crunched inside for dinner and were petting their Goliath-sized German Shepherd in the kitchen when we heard whispering coming from the living room. Mom opened the door a moment later and used her do-not-talk-back-to-me voice to tell me that Dr. Weber had decided he wanted to give me a neurological exam before our appointment. My eight-year-old mind had no idea what this meant, except that it must be bad. I nodded at Mom and strengthened my mental charade of healthiness.
Mrs. Weber and Mom exiled the Rebekahs, Brandon, and David into the living room. I guess I just stood in the middle of the kitchen floor smelling the spaghetti sauce until Dr. Weber came through the door and asked me to sit down at the kitchen table. My child’s mind remembers him as a piercing, blue-skinned man, like a haunted, bespectacled Pillsbury doughboy. As I stared at Dr. Weber, my heart clenched in fear that I wouldn’t be able to hide what was wrong from him. He would know.
I sat down at the honey-oak table and swallowed the nervous saliva collecting in my mouth. I don’t remember what Dr. Weber said. He must have tried to reassure me, but all I remember is my horror that the exam would tell him I was not normal. Not seeing any other option, I tried to do as he asked. Touch my nose with my right hand. Touch my nose with my left hand. Follow his finger with my eyes. Stand up. Touch my toes. Close my eyes. Push against his hand. Stand on one leg.
I never knew if I had passed that neurological examination in the Weber’s kitchen or not. I assumed I failed when Mom told me I still had to go see Dr. Weber in his office the next week. I was never scared of going to the doctor as a toddler or young child. Despite the crying children and hacking ill people, I thought it was fun. Playing doctor with my blue plastic reflex hammer and yellow stethoscope was one of my favorite games. But at eight years old, I developed a fear of doctors.
Part of the fear came from the pain. The nurses took my blood, leaving me unable to stand up until the fuzzy weakness passed. The doctors poked and prodded until I wanted to build a moat around myself and raise the drawbridge. But most of my fear of doctors came from the feeling that I was being watched and evaluated by them, and if I tied my shoelace wrong, they would have the power to take my life away and diagnose me with death. I thought my life would be over if a doctor discovered what was wrong with me.
* * *
As January morphed into February, my headaches stopped. I still remember the bubble-bath-like relief of normalcy when I realized I had gone more than three days without a headache. Up to now, I have never experienced another headache like those that erupted inside my brain that January. The beginning of February on Mom’s calendar looked almost normal. Since Dr. Weber couldn’t explain, I thought the headaches must have been some kind of freak alien invasion that had now passed.
And then the days of my life that were slowly coming together were sent back into the meat grinder when Mom wrote on February 17th, “First notice of irregular muscle movement.” Even now, my heart throws up at the sight of those six words. Of course, I had been hiding the shaky extra movements for a few days before February 17th, but I never admitted it. If I tensed the rebellious muscles, I could usually stop them from shaking or moving. If my left arm jumped, I imprisoned it against my side and quit using it. Fortunately, I am right handed. Unfortunately, this didn’t work for long since Mom had eyes and noticed I wasn’t using my left arm at all.
On a Wednesday night in February, I met Mom at the glass doors to the parking lot after Bible Study. It had rained that afternoon, and now the air felt polar.
Mom stopped to chat with a friend on the cracking sidewalk and severe shivers began to ripple through my shoulders. The shivers made my steps jerk like a twitching cat as we continued to the car. Mom noticed. “What’s wrong, Elizabeth?” she asked, and a deep scratch in her voice warned me it was going to take more than a normal excuse to misdirect her.
“I’m just cold! I promise, I’m okay,” I remember trying to get her to believe, but my tears gave away the terrifying fact that I was trying and failing to control the shivers. Dread suffocated my chest as Mom buckled David into his car seat and replied over the click of his seatbelt,
“Elizabeth, there is still something really wrong with you.”
Besides the abnormal movements, my tongue also turned to mud in February. I couldn’t make it move smoothly enough to articulate, so my speech became slurred. Some days, I refused to talk altogether. Mom recorded on March 8th, four days before my ninth birthday: “Elizabeth kept to herself this morning. When she finally let me see her, the movement was worse, and her speech was slower.” I was staying within the protective yellow fortress and fuzzy acceptance of my bedroom because I wanted to hide all my abnormalities. I just wanted to bury my head in the blue daisy comforter and pretend I was normal.
I had been taking ballet classes at a local studio since I was three years old. The sweaty room of mirrors and barres promised endless opportunity to my idealistic mind. Mom would drive me to ballet classes and play Legos with David in the germ-infested waiting room while they waited for me to fulfill my dreams. Now, I felt like every failed pirouette and shaky point of my foot into a tendu was the evidence of my abnormality. Maybe none of my classmates noticed, but my jaw shook as I came out the door of the studio and told Mom I didn’t want to take ballet anymore.
The thought that I might not ever be able to dance again if my body continued to attack itself never entered my mind. I just wanted to hide until I succeeded in getting my body’s rebellion under control. I had no doubt that if my parents and the doctors would just leave me alone long enough, I would be okay.
* * *
Dr. Weber referred me to what felt like a never-ending line of cardiologists and neurologists, even though it was actually only one cardiologist and two neurologists. I tried not to think about the doctor’s appointments until Mom announced it was time to get in the car. Tears would drip silently down my face in the backseat as she drove me to see the doctors. Most of the time, I could hide the tears from her by looking out the window. I didn’t want to be seen like this by anyone, much less another doctor who was going to tear down my defenses and try to force me to display my lack of control over my own body.
Over the course of the next four months, I had multiple electroencephalograms (EEGs) on my brain waves, a magnetic resonance imaging (MRI) on my brain, a urinalysis to check for toxins, a streptococcal test to check for the strep virus, blood tests to check my thyroid and blood sugar, an electrocardiogram (EKG) on my heart, and a round of amoxicillin (antibiotic) in case of possible brain infection.
I remember for the EEG, Mom had to keep me awake the night before, so I would sleep through the test. She tried to make the night into a party, renting The Princess Diaries and popping popcorn, but by 1:00 AM I was asleep. During the test the next day, the technician slipped a cap covered with electrodes onto my skull and stabbed me with sensors. I lay awake in the hospital bed, even though I was supposed to be sleeping, because I wanted to listen to the soothing tones of Mom’s voice as she told our story to the EEG technician. During the MRI, I had to lie completely still in a whale’s-mouth tube that made loud clicking noises. If I moved my pinky, the MRI technician scolded me through the microphone. Grandpa and Nana came to the hospital with us, and Nana brought me a three-foot tall teddy bear. He wore a red and pink bow and isn’t as soft as he looks.
* * *
By the end of March, I had visited so many local doctors that I had become an interesting case phenomena for them to discuss at their social meetings, but none could give me a diagnosis. Dr. Weber made an appointment for me with a pediatric neurologist at the University of New Mexico Children’s Hospital in Albuquerque, New Mexico. My stress level multiplied with each passing mile during that three-hour car ride. By the time we arrived at the futuristic hospital in the hub of Albuquerque’s Metroplex, I was so tense from stress that my arms and legs didn’t want to move at all. As I tried to force my knees to bend so I could walk, the terrified thought that the neurologist would notice my odd gait sent off a flare in my brain.
We entered the hospital through revolving doors and found the pediatric neurology office on the directory. I couldn’t keep dread from strangling my chest again as the familiar routine began. Sit in waiting room. Mom fills out paperwork. Nurse calls my name. Walk to nurse’s station without drawing attention. Nurse takes my blood pressure, heart rate, temperature, height, and weight. Sit in exam room on noisy, paper sheet. Greet and smile at doctor. Try not to jerk during lung, ear, or stomach exam. Prove I can touch my nose and toes for neurological exam. Sit back on noisy paper sheet. Listen to doctor talk to Mom and Dad.
At this point, I figured most of my acting was complete. Not so at the pediatric neurology office. “Would you watch Elizabeth walk, Dr. Vanwell?” Dad asked, rubbing his palms on his jeans. “She seemed to be having some trouble on the way to your office.” I should have known that Dad, who has always been capable of performing any job or solving any problem, the Mr. Fixit of my life, would not resign himself to watching while I struggled.
“Of course, Mr. Anderson,” Dr. Vanwell answered as she made a note on her clipboard before moving to the door and opening it. She was the model of the genius, detached physician. So detached in fact, that I can’t remember a single other detail about her. “Why don’t we step out into the hall? Elizabeth, just walk down to the water cooler and then back to us.”
“Okay,” I mumbled, sliding off the exam table. I knew I wouldn’t be able to walk that far without several jerks and stiff movements. I tried anyway, but the stress from trying so hard made my steps even worse. I looked like a malfunctioning C3PO. Holding my breath and clenching every muscle against my bones, I was so focused on controlling my body that I didn’t think to bend my legs.
“Hmmm. Thank you, Elizabeth,” said Dr. Vanwell. “Why don’t you get a lollipop from Ashley at the nurse’s station while I chat with your parents?” I nodded like a dumb child, but I knew exactly what she was doing. She didn’t want me in the room while she announced that she was going to have to take my life away to make me “better.” I couldn’t think of a way to stop her, so I marched down to the nurse’s screen where the smell of doctor’s office cleaning sterilizer ruined the lollipop Ashley gave me.
* * *
My parents didn’t tell me much on the drive home about their private conference with Dr. Vanwell. Mom wrote this question in her notes: “Is the abnormality in Elizabeth’s brain like A) a brown spot on the leaf of a healthy plant? Or like B) a branch of the plant dying and falling off?” I don’t know how a parent looks in the eye of a doctor and asks that question about their child. She didn’t write down the answer.
She did tell me that Dr. Vanwell read my MRI and EEG results and found an abnormality. She said the doctor thought I had epilepsy presenting as abnormal (choreoathetoid contracting and twisting) movements, though I had never had a confirmed seizure. I didn’t believe it, nor did I ever mention that my neon mosh-pit night might have counted as a seizure. My mother said I was supposed to try taking a low dose of a seizure medication, Depakote, to control the movements. She filled the prescription of tiny red pills on the way home, and I took my first dose that night, not believing, but somehow hoping, that it would do something. Every time I took the Depakote it burned my throat, and I tried to drown it in juice after swallowing.
Nothing happened right away. I swallowed the Depakote twice a day for a week before I noticed a difference. I woke up one morning in my daisy-covered comforter and used my left arm to brush my bangs out of my face. It took me a moment to realize my arm hadn’t spasmed or jerked. My muscles no longer rebelled. Mom marked the good days and the bad days on her calendar. Until about May, the good days and the bad days were pretty balanced. But I was able to sit at my school desk in Mom’s room and write again. My handwriting didn’t look like the textbook example it did when I was in second grade, but it also didn’t look like my five-year-old brother’s handwriting anymore. I went back to ballet class. My pirouette was normal.
* * *
The spring dance recital snuck up on us toward the middle of May. Mom helped Rebekah and I put our hair into hairspray-plasticized buns. She brushed on brown eye-shadow and black liner. I made her let me do my own mascara because I always felt like she was going to poke me in the eye with the mascara wand. I pulled up my pink tights, which were somehow still run-free, and squeezed into my tutu. Then Mom finished my preparations with her own lipstick, which tasted like dirt and red Gatorade. I was ready. As we drove to the theater, I sat in the backseat of the van choking on the scent of hairspray. I stared out the window streaked with condensation smiley faces and realized that I had not had to make any extra effort to control my muscles that day.
At the theater, my ballet class waited backstage for the audience to arrive. We plopped in a circle on the floor of the greenroom, playing with the Polly Pockets Sarah snuck in her bag. Nut-bar and cheese stick wrappers sat in a discarded pile next to our dolls. As I twirled Polly in a halting pirouette, I remembered Dr. Weber would be at the recital. For a split second, all my fears came back. I abandoned Polly on the dingy brown carpet as thoughts flashed through my mind. Would my body rebel on stage? Would everyone see?
But it was too late to refuse to dance now. My class was counting on me. Besides that, if I quit, everyone would know I couldn’t dance because there was something wrong with me. I looked up and saw one of my classmates peeking out the doorway of the greenroom. It was time to dance. I tucked the elastic ties of my ballet shoes inside their leather toes and followed my class into the hall. During the song right before ours, we waited in the black, curtained wings of the stage. I felt like a malfunctioning robot monster disguised as a faerie in my ballerina tutu.
Our music began. I ran on with my class. I stretched my right leg into a tendu. The lights mesmerized my fears. I spun in a pirouette. I smiled at the audience. I bent my knees to plié. I licked my dirt and Gatorade covered lips. The girl next to me took my hand. We skipped together.
The last notes of our music leaked away. I ran with my class into the curtains. I didn’t know how I did. I was shaking. But at least I danced. Maybe I was better. And maybe, just maybe, it wouldn’t always matter so much whether I was normal or not.
Emily Adams is a recent graduate of Colorado Christian University and passionate about writing creative nonfiction to share testimonies that encourage and inspire her readers. Emily is a news writer for the Billy Graham Evangelistic Association where she composes stories of God’s work at the Billy Graham Library. Connect with her through her blog at tiptoepointes.wordpress.com.