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A doctor once told me I should not be a teacher. My condition would hinder me tremendously. I won’t always be able to hear my students. I could have a vertigo attack in the middle of the lesson. I might go completely deaf. I might fall over. The sheer stress of all the simple teaching tasks would leave no room to make the deep connections I long to make. I want to show this doctor Elle, my student who is also hearing impaired, who writes me a post-it note of encouragement every afternoon at 2:45 and who will someday save lives as a missionary doctor. I want to show him Megan, a student on my speech team who wrote a speech about her struggle with Bell ’s palsy. I want to show him the ceramic plaque she made for me with the Eleanor Roosevelt quote, “No one can make you feel inferior without your consent.” I want to march a parade of students into his facility, a parade of students who could technically always speak but now have a voice with confidence behind it. I want to show him my Zac and the scars where his tumors once were. I want to let him see Josie, my student with one arm who volunteers to pass out papers and jumps to help when a classmate drops the basket of markers. I want to show him the cartoons and essays and art and perfect grade point average of Sam, my student fighting and beating cancer.
Secondary teachers are brave enough or stupid enough to relive their middle school or high school experiences every day. After four years in the profession, I’ve observed that kids are still mean. Labels still exist. Senior boys still break freshmen girls’ hearts and girls still put other girls through hell. Different is still unacceptable. Caring too much is still uncool. And having an illness that no one understands is still isolating, frustrating, and awkward. “Be kind,” I stress, “Everyone you meet is facing some sort of battle.” I was around their age when I woke up and the numbers on my digital clock were blurry. My dad documented in careful print: “November 1, 2000 Initial Symptoms: ringing in ears, dizziness, vomiting, no fever.” But I mostly remember the clock and how the numbers made me confused and nauseous. I remember leaning over my bed to throw up .The slightest movement of my head caused me to vomit. I remember the night before I was attempting algebra homework at the kitchen table and was frustrated because I couldn’t figure out what “x” equaled. I still hate math but ever since then, I wish the value of x was still my biggest frustration, my most prevalent question; I wish merely math kept me up at night.
“November 2, 2000 Observances: Slept most of day. Continued dizziness and vomiting. Couldn’t hear beep of battery operated thermometer.” When you stay home from school, you are supposed to watch trashy television all day, read teen magazines, and eat soup. I didn’t watch television. I didn’t read because the words were scrambled on the page. I certainly did not eat anything. I vaguely remember not hearing the beeping thermometer. I mostly remember sensing my parents were scared.
On November 3, 2000 an appointment was made to see my pediatrician. I tried to get up to walk to the car. My body did not move the way I wanted it to move and everything else around me moved when I didn’t want it to. I was carried into the clinic and placed on an examination table. I remember the pediatrician’s icy hands and gentle voice, a picture of Big Bird floating in a hot air balloon on the ceiling, a table with Bible picture books, and a poster with laughing cartoon people and a caption that read, “God can’t do what?”
Dr. Benson, a kind old man I wished was my grandpa, could not diagnose me but ordered several tests and admitted me into the hospital. The nurses did not have soothing voices and were not skilled at sticking the IV into my tiny rolling veins. After several tests, they said I had mononucleosis. Later, my parents were told the mono spot test was a false positive. Perhaps I had viral labyrinthitis instead; perhaps I did not. My parents slept in plastic chairs. The town was infested with white squirrels. Nothing was good there, not even the lime Jell-O.
Nine days later, I went back to eighth grade. My mom thought it was too soon, but I begged her to let me go half a day. I wanted to know what we were reading in language arts. I didn’t want to get even more behind in algebra. I didn’t want the popular table to give my seat to someone else at lunch. It had taken time and effort to worm my way into their world of boy-girl parties, highlighted hair, and Hollister clothes, and I knew they could shut me out of that exciting new world in an instant. I was still weak and pale, and my size zero pants hung off of my body without a belt. I couldn’t hear the bells that signaled the end of each period. I just got up from my desk when I saw everyone else start to walk towards the door. I made my best friend walk beside me to prevent me from running into walls. I felt unsteady on my feet, like I was a toddler or an idiot who rode the scrambler ride at the fair six times in a row or how I imagined a drunk must feel.
November 17, 2000, according to the log, was the day I took a hearing test at Barnes Hospital in Saint Louis. I was put in a large box that resembled a spaceship. The test did not merely consist of raising my hand when I heard a high beep or low tone but of pushing a button and repeating words back into a microphone. I showed no speech discrimination in my left ear and tested badly in my right ear as well. I was a bright girl and became frustrated when I could not tell the difference between side-walk and truck-stop, doll-house, and bird-bath. I randomly repeated “ball, ba-lloon, and bath-tub” when I had no idea what words the recorded voice spoke. It didn’t hurt to guess. I hated failing a test, no matter what type of test.
My mom told me countless times to pray. My mom, dad, and sister asked God to fix me every night at the dinner table as we held hands around the table. “You’ve been praying, haven’t you?” “Don’t give up” was her favorite phrase. “God can do anything. Just keep praying,” Dad reassured. I didn’t have the heart to tell them I’d forgotten how. I hated my life and I hated God and wasn’t sure He even existed because once doubts start, they don’t stop. I did not feel “fearfully and wonderfully made.” No way was I taking part in the Elders praying over me with their hands on my head, ears, and shoulders with other arms reaching out to me. I had visions of speaking in tongues and foot washing and bread breaking and communion drinking, and I cringed. “Ha! God can’t do what?” Well He couldn’t, or wouldn’t, make me well. He couldn’t even allow the doctors to figure out what was wrong with me.
We received the results of the MRI. The log states: “There was no evidence of acoustic neuroma. The ventricular system is unremarkable and there is no evidence of mass lesion, mass effect, or abnormal enhancement.” So I didn’t have cancer, a tumor, or a neurological disorder according to my scans, but my hearing still fluctuated and I still staggered when I walked. Although the results were normal, my mom was noticeably nervous and emotional before that first MRI. She wanted to go into the room with me. The test was administered with gadolinium (blue dye used for contrast), and the nurses injected the dye into my arm through an IV. My blood vessels constricted, blue dye seeped into my tissue, my skin bubbled up, blood and dye rushed back into the IV tube, and my mother dropped my hand she was holding and fainted right there in the room. Still confined in the machine, I heard the doctors trying to revive her. When my mom was conscious, the tests were over, and I was finally free, I wheeled her out of the hospital room. During the months after the occurrence, I bet we told that story fifteen times to friends and relatives. It got funnier each time we told it: “I wheeled her in; she wheeled me out.”
The next place I wheeled into was Shea Clinic in Memphis Tennessee. After Dr. Ehlrich referred me to Dr. Neely, the head of otology at the Washington School of Medicine, we decided to get a second opinion. Dr. Neely, with his unruly gray eyebrows and cocky attitude, called my condition “probably permanent.” What exactly my condition was, however, he never could say. On some visits, he told us the condition was auto immune inner ear disease, other days he decided to go with Meniere’s disease. He used unnecessarily large words. He was supposed to be the third best ENT in the nation, but I just sat trying to answer his confusing questions and feeling sorry for my parents who vigorously scribbled misspelled medical terms and waited patiently with their carefully recorded questions and my log of symptoms. Back and forth to St. Louis meant a six hour car ride for us. Dr. Neely always seemed to be in a hurry. Then he was gone, leaving his nice nurses to schedule an appointment in another two weeks so I could miss school again, read People Magazine in the waiting room, and go home with no answers.
Dr. John J. Shea III did several interesting tests on me in Memphis. He inflated a tiny water balloon inside my ear. He spun me upside down. He put me in a dark room and made my eyes follow the lights. Still, our second opinion didn’t produce any valuable results. He put me on a low salt diet and told me to avoid all forms of caffeine. “You’re on a diet?” I remember my lunch table asking, “Why? You already look anorexic.” I was diagnosed with idiopathic sudden sensorineural hearing loss. Dr. Shea said I was a candidate for Dexamathasone profusion (a procedure which involved shooting steroids into my eardrums) but at the time, the procedure was very risky and very expensive. “Idiopathic hearing loss,” I kept repeating to myself. As far as I remember, I liked this doctor better than Unruly Gray Eyebrows, but he couldn’t give me a real answer, so in my fourteen-year-old opinion, “idiopathic” meant he was just another idiot.
On April 21, 2004 my hearing went down completely. I went to bed one night excited for the busy week ahead. I was ready to enjoy the annual choir trip, attend my junior prom, and score highly on my ACT test. When I woke up the next morning, I was deaf. My ears were buzzing, ringing, and roaring. I felt schizophrenic, and I panicked. I didn’t know sign language. I stared at the ceiling for a few hours then slept the rest of the day because I wasn’t sure what else to do. My parents called Dr. Neely who prescribed oral steroids. I gained weight. My moods shifted. I was depressed. The steroids did, however, somewhat ease the ringing and brought back most of the hearing in my good ear. I went to prom, but reading lips and straining to hear what people were saying was exhausting. I couldn’t hear other people talking and therefore did not feel like talking to people. I also didn’t feel like dancing. With all of the extra noise in my head, I didn’t do so well on the ACT test a few days later. I had other questions on my mind. I wanted answers and not the kind that could be found on a scantron sheet.
I remain deaf in my left ear. The hearing in my right ear comes and goes, and when it goes or I have a vertigo attack, I feel like a scared teenager who just wants life to get back to normal. I want a life that is more predictable and a body that is less of a nuisance. The tinnitus is constant and worse on days that I am stressed out, I don’t eat right, or I don’t get enough sleep. I find it fitting that Vincent Van Gogh and Emily Dickinson were thought to have had Meniere’s disease (the condition I most likely have). While I have never seriously considered cutting off my own ear, on bad days I feel like becoming a recluse and writing obscure poetry instead of facing the world.
I’m more observant now. Other senses do compensate when another is damaged. God must have wired the human body that way. I also know God heals—the heart—if not always the body. I’ve learned there is much more to listening than merely hearing. I can hear the sound of hope rising. I can hear the sound of a heart knitting itself back together again. I can taste tears before they splash. I can see a soul’s dance. I can feel a Godwink. I can understand a shaken, upside-down world where image and others’ opinions seem to matter so much. Through these students, I relive the hurt and the wisdom that comes from the hurt. I simply remember what matters and what does not. The Holy Spirit draws me to them, pulls and attracts me like a magnet to those students who are fighting a battle, who remind me of myself. God gives and takes away—but sometimes, through the taking, He gives.
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