Without a doubt, last week was one of the toughest experiences for me yet. For four days I was pretty much confined to my hospital bed, except to use the commode and to sit in my chair, both at my bedside. I was under mandatory sleep deprivation the whole time, but able to sleep between 2am and 6am. The sleep deprivation was a challenge in and of itself, because eventually, I'd get to the point where my eyelids just were too heavy, and the next minute my nurse would be shaking me awake. My legs were sore, as was my back from constant lying down and I had to have gauze wrapped tightly over my scalp that was covered in electrodes and wires. It was very itchy and often times, burned the right side of my forehead. The doctors did not want me or the nurses fiddling with it, and could only offer me Benadryl or Tylenol, which tended to make me very sleepy.
There were some fun times of watching movies and munching on sweets and drinking caffeinated soda to keep me alert and accelerate my heart rate. There were times of heavy, side-splitting laughter, and I am thankful for that. Yet, in the many other spaces of time, that was simply not the case. I would get very agitated, exhausted and drained. The point of a video-EEG is to record any brainwave disturbances and abnormalities, that could be signs of Epilepsy or other neurological issues.
That being said, the doctors wanted to induce as many of my seizures as possible. My episodes are more-often-than-not convulsive and sporadic, involving eye rolling, spitting up, labored nasal breathing and sometimes mouth-tongue clicking.
Until recently, I used to be aware of what was going on around me during an attack, and it was torture; I felt so alone, like you do in those dreams where you scream and no sound comes out just when a potential rescuer comes near you. It's like drowning in your own air. I'm hyperventilating so bad, it feels like I can't breathe. It feels like a volcano is erupting - all the pain, incredible excitement, or exhaustion that I've buried (whether knowingly or subconsciously)... It all rushes upward from somewhere deep inside me and spills forth so fast and so intensely that I just collapse into a state of convulsions. It's like hearing voices under water, it's like seeing things through a kaleidoscope or reaching up in desperation only to find that your rescuer is there, but doesn't care about your fate. It's like a room closing in, a fan spinning until it's part of the wind, or an elevator suddenly dropping at the speed of light.
Now-a-days I can barely remember anything that happens during an episode, but sometimes I remember distinctive loud and momentary sounds. Needless-to-say, the whole idea of knowing the doctors were intentionally trying to make me seize was enough to drive me up a wall. I was in an Epilepsy monitoring unit with several other patients down the hall, and every time someone had an episode, an alarm would go off, all the lights in the room would turn on, bright and white and big, and several nurses would rush in like water flowing out of the mouth of a tunnel. There'd be this recorded female voice that would say, "Patient event in room [#]... Patient event in room [#]..." It wasn't very hard for the alarm to wake people up.
After each episode, the nurse or doctor would say in a loud voice, "squeeze my hand, Sarah... Sarah... Squeeze my hand... Open your eyes... Can you open your eyes? Open your eyes... Point to the ceiling... Point to the wall... What's your name? Your name, honey! Can you remember 'three red pens?'... Sarah! Open your eyes! Sarah, squeeze! Squeeze... Point to me... Point to the ceiling... How many pens did I ask you to remember?" Sometimes, you'd get a firm tap on the cheek. Coming out of an episode to all those commands was very jolting - as if you were dozing off and were startled awake by cymbals slamming in your ears. I remember feeling in those moments like my head was going to explode and if I could've put my hands over my ears, I would've. They had to be loud because the cameras needed to pick up the voices clearly, and they needed to test how lucid and responsive I was at different times after the episodes. It is an extreme rarity for me to be able to speak afterward for 20 minutes to 2 hours, at the most. I'd try to answer them, but it was like my tongue forgot how to form the words. I'd be weak and utterly tired. Being disoriented is the worst.
After my first episode, I started crying. I did not want to be yelled at. But my mom and nurse at the time sat with me an explained that their reasons and put me at ease. Still, the stress continued. I'd often have to be repositioned to alleviate the pressure on my spin and thighs, and the wires hooked to my head often got tangled. I couldn't go to the bathroom without someone right beside me, and being 18 and having to be propped up by one nurse while my mother cleaned me up, left me feeling very exposed and burdensome.
On Wednesday, I was able to sleep for about 30 minutes before the strobe light testing. They made me stare directly into the flashing light and by a certain speed at a certain brightness, I'd convulse. Then they'd suction the pooling saliva from my mouth, and do it again, and again and again. Strobe light, seizure, suction, strobe light, seizure, suction, over and over and over. Then they lightly tossed water in my face during the seizure to test my response.
My mom started crying, she said. She had to step outside because it was too much and afterward, when they finished. I broke down and cried. The best way to describe the experience is to have you picture what it's like to be tased. You get tased, then when you think it's over, the police officer tasers you again and again just as you start to come out of the fog. It was like being emotionally tased, really. All I remember is being told every few minutes to shut my eyes, then open them and then the flashing began and the next thing I knew, I was hearing the doctor say, "again..." and the lights would go off. "Close your eyes... Open..." A few minutes would pass... "Again. Lights off..." Every time I'd stare directly at the yellow light, the blackness became so blotchy and off white, that I couldn't see anything but white, and then my bed felt like it was falling backward slowly. I was sweaty and frustrated. I have a thing with feeling vulnerable, and this really pushed me to the edge of snapping.
When it was all over, I remember being rolled from my side unto my back. I was so limp and drained. Mom sat by my bed and kissed my hand and hugged me, and said, "I'm here sweetie, it's all done now." My head was throbbing. My lip quivered and I cried, hugging her arm. The nurse came in and put an oxygen nasal tube in my nose, and he said, "I was there thinking, 'when is this gonna end? I didn't know they were going to do it that much."
Later that day, daddy came to visit. Boy did my heart swell with gladness when I saw him! I had another seizure shortly after he came in, and then afterward, my parents held both my hands and stood on either side of my bed. Dad kissed me, and I thought back to when I came out of leg surgery at age 3, the year he and mom adopted me, I looked up at him and said in a tiny squeak: "why'd you let them [the doctors] do this to me, daddy?" He couldn't answer in a way that'd help me understand that I had to go through that so that the doctors could help me walk one day. Instead, he grabbed the sides of the railing on my bed and wept. It was like that moment, except I felt as if I could see the pain in his eyes from 16 years ago, now that I was old enough to hold that look in my mind. Mama stroked my gauze and dad tickled my cheek. "You look so beautiful, even in that head wrap, Sweetpea." I teared up.
I've finally realized more than ever how much I love my family. My mom and dad didn't ever have to adopt me, but they did. They chose me. They taught me about God and His will to heal and to bless. They held my hand through the ups and downs of surgeries, procedures, therapy sessions, first steps. They believed in me. I can't tell you how many times during that hospital stay, I heard the sirens of ambulances in my head, had flashbacks to being lifted on gurneys or watching through blurry eyes as a crowd of students moved quickly out of the way, while several teachers and a security guard rushed me to the nurse's. I had flashbacks to being held down as I convulsed, flashbacks to the sting of needles and of my friends lunging for me as I began to collapse to the floor. Flashbacks to the times I thought enough was enough and tried to take my life.
But amid all this, no matter what memories went swirling through my mind, a lullaby always managed to break through to my consciousness. A lullaby was played over the speakers every time a baby was born in the hospital. And this gave me hope, it empowered me. The fact that something known to be so long and painful, could yield something so priceless, seemed to remind me that every moment is never like the last, and because of this, we are built by each moment, yet not controlled by each moment.
As I was going home, I I cried leaving the hospital on Thursday - I literally just sat there and sobbed. There was just so much frustration, relief and closure all at one time. I had buried it for four days, endured what would become one of the toughest experiences of my teens. One of the RNs stopped in, cried with me and she said, "baby, you're not alone; most patients in this unit are going through the exact same thing... The same struggles, the same feelings. It's gonna be alright, love. You're beautiful, honey, so beautiful, and I believe you're gonna go far with your life. Smile through it. Smile through it all." She gave me the biggest hug, held my chin in her palm, made me stare her in the eyes and said, "don't let anyone tell you different." I left thinking, "Ive got a Great, big, wonderful God... A God who's always victorious, always watchin' over us... a Great, big, wonderful God."
And boy did I learn to sing. I felt like a bloodied boxer, dizzy from a round of relentless punches, always getting up. One more. One more. One more. I felt like just running and running and running and screaming until my vocal cords were ripped from my throat, until my ankles grew numb. I felt like a doll, a porcelain doll, put up on the shelf, dreaming of a word beyond a box. I felt like a wave, churning and roaring, and foaming at the edge. It's like being on the edge of your seat, it's like lying on the floor of a bobbing, swaying boat and letting the motion rock you to sleep. It's like looking out into vast blue sky and thinking it doesn't end, when really, it falls down like a dome at the edge of the ground. It's like the incredible thrill of putting your bare feet in prickly grass for the first time in Spring, or like the rush you get when you're just about to finish a timed test a second before the alarm goes off. It's like getting up there, getting out there, speaking up and making yourself heard for the first time, and then realizing that standing ovation is for you. It's that moment that you realize, you're better than this. That moment when you sing without a song, and still hear the melody in it. You see meaning in it. It's like déjà vu... It's like, "I've got this in me. Let's see what I'm made of."
My aunt said something to me that's stuck with me: "My sweet Sarah Del... - 'Some days there won't be a song in your heart. Sing anyway.' Emory Austin"