A Lesson in Performance and Neuroscience

by Kara Warnke

Grand Mal Seizure

Quite literally, a “Big Bad Seizure.” The grand mal seizure occurs when the electrical signals in the brain begin to behave abnormally. Many neurons will begin to fire synchronously, causing the person to seize. The grand mal seizure consists of two stages: the tonic phase and the clonic phase. In the tonic phase, the person will lose consciousness and cause muscle contractions which force the body to fall to the ground. The clonic phase occurs for much longer and has more dire consequences. The muscles of the body repeatedly contract and convulse. The person will lose complete control over her own body and will lose consciousness even after the seizure has run its course (Mayo Clinic 2020).

“Can you tell me what day it is?” My nostrils burned from the smell of antiseptic. “Can you tell me what month it is?” This was not my bed-

room.

“Can you tell me what season it is?” This woman’s face wasn’t registered anywhere in my memory. “Can you tell me your name?” “I should know this.” I didn’t know any of this.

For two summers in high school, I went to a color guard camp at Michigan State University. I voluntarily devoted myself to spending twelve hours per day in the July heat and humidity while engaging every muscle in increasingly intense exercises. I hated every moment of it.

But the instructor was a color guard god. His flag was a paintbrush, the world around him his canvas. He painted sunrises and ocean waves with each sweep of the pole, leaving us trying to imitate his art with our basic package of 10 RoseArt crayons. “Internalize the pulse of the music. DAH-dut-dut-dutDAH-dut-dut-dut. You need to feel it right here,” he’d say, tapping in time with the music. “If you can’t feel the music, your flag won’t either.” We internalized the pulse. “Don’t leave spaces in your work. The movements should flow together and form a complete sentence. There should be absolutely no fragments left behind.” We completed our sentences. “Pay attention to the position of your body and flag during every count. Be aware of your positioning during the off counts too. The ‘and’ is just as important as counts 1, 2, 3, and 4. If your flag isn’t where it’s supposed to be, control it. If you aren’t in control, who is? This metal pole and a piece of fabric? Squeeze harder. Use more strength.” We took control. By the end of the week, he had melted our crayons down and replaced them with the finest watercolors and brushes. And we painted.

Oligodendroglioma The oligodendroglioma is a small tumor, built up of glial tissue cells, or oligodendrocytes. These are the cells that would typically make up the brain’s supportive tissues. They are not required to simply exist on their own and may be combined with other types of cells. An oligodendroglioma is typically grayish-pink and soft and can appear to have short arms when viewed under a microscope. Some may say that one resembles a fried egg. Lower-grade tumors are typically non-cancerous but may be accompanied by seizures, calcification, cysts, and personality changes. Higher grade anaplastic tumors tend to be malignant and cancerous, often causing death. One may find an oligodendroglioma on the frontal or temporal lobes of the brain. This does not mean that the tumor is constrained to only these locations. They may grow anywhere, and if uncontrolled, will spread as far as they please (American Brain Tumor Association 2019).

“Well, the MRI came back, and it showed that you have this little tumor right here on your right frontal lobe.” Dr. Chugani zoomed in on a small grey area on the computer screen. “To be frank, I’m surprised that none of your previous neurologists caught it before.” It was the size of a pencil eraser. And it ruined my life. It shot the fireworks that rendered my consciousness obsolete. “So, what we need to look at now is what our next steps are. There’s always the option of just leaving it be and hoping your medication takes care of it so that it never happens again. But that’s a little risky. I’d like for you to seriously consider a surgical procedure to have the tumor removed.” My entire body convulsed, not from the electrical signals in my brain, but from the soul-shattering thought of exposing my brain to the world it was never meant to see directly. My mom’s hand was suddenly in mine, gently squeezing. My mind worked to erase this possibility from my memory, but the glial cell pencil eraser remained and forced itself to the forefront of everything. On the morning of my surgery, I curled up in my mom’s lap, crying that I didn’t want it to happen, that I didn’t want to go. I braced myself in my hospital gown on the bathroom floor. But time didn’t stop. The surgery processes didn’t stop. The midazolam flooded my veins through my IV, causing me to lose awareness before slowly feeling consciousness drift away. ~ College marching was different than high school marching in every way imaginable. It required strength and stamina beyond possibility. Veteran members were superheroes, with lock-step so sharp it could slice a tree in one fell swoop. They’d laugh and talk together after pregame run-throughs while I choked on my water, gasping for air. Marching was wobbly. Balance was a fantasy, but only to those who had just begun their time here. Those who had come before were masters of this witchcraft and never faltered. They worked the forces of gravity in their favor, allowing themselves to remain upright with one leg in front of them, thigh parallel to the ground.

beat!” “Don’t kick your legs out when you move!” “Be more snappy with your movements!” “You’re fazing a bit, make sure you’re not falling behind the

“Lock your post leg and squeeze your core to stay strong and sharp!” The advice was easier said than done. My body failed to recognize and accept my demands and actively worked against my every intention. I failed.

Epilepsy

Epilepsy, a type of seizure disorder, is the fourth most common neurological disorder in existence, characterized by seizures that present themselves unprovoked. It is estimated that approximately 65 million people worldwide live with epilepsy, 34 million of which reside in the United States. Those persons with epilepsy have had at least two seizures that cannot be traced back to a reversible medical condition. Epilepsy may be connected to genetics, brain structure or injury, or metabolic issues, but the majority of cases have no known cause. Still, most epileptics can minimize their seizures with medication and/or other treatments and live mostly normal lives. Even then, people with epilepsy must take extra responsibility for themselves and take extreme caution when participating in certain activities, such as swimming, driving, working, and eating certain foods (Obsorne Shafer 2014).

“Alright, Kara. I know you’re still really sleepy, but I am going to need you to lift up your left arm for me okay?” My morphine-drugged body complied, and the strange woman next to me breathed a sigh of relief. “Fantastic job, now can you wiggle that left leg for me?” I waited a few moments, then took her satisfied nod as an indication that my body had in fact seen her request through. Anesthesia still coursed through me, rendering my eyes as useless as a faulty digital camera, pulsing the cellulose ceiling tiles

in and out of focus. I was a drunkard, and every attempt at speech slurred enough that the words undid themselves and became the antithesis of comprehensive sentences. My brain still allowed for the untangling of the linguistic threads from other mouths through the painkiller fog. It allowed me to learn about the fears the doctors had experienced during my surgery. The tumor had grown. The tumor was resting atop my motor cortex. They might have bumped that area when they removed my tumor. I might have lost my ability to move the left side of my body.

I wasn’t built to be a dancer, but some routines forced me to act as one, leading my own struggles with bodily movements to be amplified. I was expected to be flowy and graceful in every movement. Despite my lack of dance training, save for the two years of jazz and ballet I took when I was in early elementary school, I was expected to dance and spin with the technique of a professional. My back legs weren’t straight enough when I did chassé and sauté combinations across the field. There were too many moving parts in a calypso for me to keep track of: chaîné on relevé, chaîné in plié, fan kick with the front leg, push up and out with your back leg pulled into an attitude derrière, land in the correct position to turn into a ground roll, then pull yourself up from the ground, and make it all one fluid motion. I looked like a newborn calf, spinning in circles before shifting into an awkward hop before flopping onto the ground all at once. I couldn’t lift my leg higher than my hips when we practiced battements, and my hips were never turned out far enough during piqués. They said my landings were too rough, I should never be using my heels when I move. “When you guys are dancing, you need to let the energy extend all the way through your body, shooting out your fingers and toes. If it helps, imagine you’re moving through a big vat of Jell-O. You need to push through the air with force, and when you leave the ground you need to push through that as well,” my instructor shouted from the front of Elbel Field. “Make sure your lines are straight when you extend your arms and legs. I want to be able to see the force you are putting behind them from all the way up here.”

We’d run the dance sequences over and over again, never to her complete satisfaction. We’d be dismissed with an obnoxiously loud sigh to get water and flags, to be pushed more to achieve a level of perfection that seemed unattainable.

I wanted to try and stand up and walk approximately four hours after my skull had been cut open on the surgical table. My nurses didn’t give me the opportunity to make even the slightest of attempts but allowed me to raise the incline of my bed by 25 degrees and let me sip heavenly nectar from a hospital apple juice box. My body fought every upright movement, begging me to lower myself back down to what was safe and comfortable. My stomach threatened to self-destruct with each turn of my head. They let me stand the next day. My brain did not. My feet meeting the floor led to my lunch of ice chips meeting the bottom of the bowl next to my bed. The next day, I was allowed the agency to take a few steps. My body never signed the permission slip, so I was sent back to bed.

My arms are stronger than angel hair pasta but far weaker than the average twig. Strangely enough, people in color guard are required to have the strength of a standard 2x4 at minimum. Twigs can’t handle a fifteen-minute show of constant arm movement. They struggle with maintaining perfect technique while keeping in time with the band during a windy and rainy day. My instructor knew I wasn’t strong enough. She knew I struggled with building my own body strength, yet she continued to shout, “push through it!” and “use your muscles!” from the tower as though it could really make any difference in what my capabilities were.

I performed during halftime at our final game of the decade against Ohio State. We capitalized on the 1920s, pulling fast, energetic songs to represent the decade. It was windy on that Saturday evening, and the silk of my flag did not take kindly to the harsh

gusts. It preferred the safety of my velour jumpsuit and clung to my leg for the entirety of the show. The wind won the battle against my arms and took the flag hostage. I wasn’t good enough or strong enough. I lost.

Oxcarbazepine

The drug Oxcarbazepine (10,11-Dihydro-10-oxo-5Hdibenz[b,f]azepine-5-carboxamide) is most commonly used for controlling certain types of seizures. Inactive ingredients include colloidal silicon dioxide, crospovidone, hydroxypropyl methylcellulose, iron oxide, magnesium stearate, microcrystalline cellulose, polyethylene glycol, talc, and titanium dioxide. When in powder form, Oxcarbazepine is soluble in chloroform, dichloromethane, acetone, and methanol, but is mostly insoluble in ethanol, ether, and water. The initial dosage of Oxcarbazepine is 600 mg twice daily and can be administered using 150, 300, or 600 mg tablets. The dosage may be increased according to the patient’s age, weight, and condition severity, but typically should not exceed a 1200 mg dose. A patient administered Oxcarbazepine should take caution and watch for adverse side effects such as allergic reactions, suicidal ideation, signs of low sodium, shortness of breath, weight gain, muscle pain, joint pain, confusion, inability to focus, change in speech, and muscle weakness. Those using this drug are advised against consuming large amounts of alcohol and grapefruit, as this may diminish effectiveness (RxList 2016).

My brain was on its best behavior for seven years. The pencil-eraser-sized cavity did exactly what it was meant to do: nothing. My medication did its job, my tumor removal surgery had done its job, and I was safe. Supposedly. I don’t think Orlando, Florida wanted me to leave. It took inspiration from Disney World’s nightly firework show and began an instant replay in my brain as I tried to begin my flight home. I remember my head turning almost 180 degrees to the left without

my consent, leaving me staring at the overhead lights behind me with great intensity, unable to look away. I wonder if this is what it feels like to have a seizure. Everything went black. I’ll have to tell Mom that I had a dream that I had another seizure on the airplane. Thank God that wasn’t real. That would suck. I could hear words around me, but they were in a language I’d never learned to speak.

Holy shit, I’m having a seizure. My friend’s mom’s voice cut through all the noise, and I somehow understood her words. “Kara, are you okay? Kara, can you hear me?” I wasn’t. I could. Every attempt at speech was translated into light grunts. I cried. This wasn’t supposed to happen. I always took my medication, I was careful with how I conducted myself and avoided dangerous activities. I had gotten my tumor removed. Why didn’t it work? When I forced my eyes open, I was greeted by the stares of hundreds of other airline passengers. Eyes concerned for my well-being, uncomfortable by the situation, annoyed that I had delayed their flight. I sent a silent, embarrassed apology to each of them.

When the EMTs met me on the plane with a wheelchair, I was hysterical. I tried to stand up and I fell. I tried to lift my arms, but they were too weak and fell down to my sides. I was lifted into the seat and rolled back out to the terminal, where I underwent a medical examination and called my mom. She was 1239 miles away and couldn’t get to me. On the ride to the hospital, I fell asleep. But when I woke up, none of it had disappeared. I made it home later that day, but nothing was the same. My bedroom and bathroom doors were now required to be unlocked at all times in case of another relapse. I was not allowed to be home alone anymore. My ability to drive legally was stripped from me for six months in a town with no public transport system. I was no longer Kara, the student, the performer, the artist, the person. I was now just the girl who couldn’t control her own body and therefore couldn’t be left to her own devices.

I don’t know if I can ever be enough. I can’t control the motions of the flag on the football field, much less the electrical workings of my own complex brain. There’s something inside of me that refuses to acknowledge that I don’t have to take responsibility for everything that has happened to me. At the same time, I can’t seem to allow myself the luxury of allowing others to take this history of mine as an explanation. That would give them reason to see me as weak. I am not weak. But then, where is the middle ground? I’m in an endless cycle of feelings of inadequacy and guilt for the things I cannot control. I promise, I’m doing my best. I’m still here, I’m still working to be all that I want to be for myself and for everyone else. I refuse to be weak.

God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. Living one day at a time, enjoying one moment at a time; accepting hardship as a pathway to peace (Niebuhr 1932)

Works Cited

American Brain Tumor Association. “Oligodendroglioma.” American Brain Tumor Association, 2 Mar.2019, www.abta.org/tumor_ types/oligodendroglioma/.

Mayo Clinic Staff. “Grand Mal Seizure.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 18 June 2019, www.mayoclinic.org/diseases-conditions/grand-mal-seizure/symptoms-causes/syc-20363458.

Niebuhr, Reinhold. “The Serenity Prayer.” 1932, Heath, MA

Obsorne Shafer, Patty. “About Epilepsy: The Basics.” Epilepsy Foundation, Jan. 2014, www.epilepsy.com/learn/about-epilepsy-basics.

RxList. “Trileptal (Oxcarbazepine): Uses, Dosage, Side Effects, Interactions, Warning.” RxList, RxList, 11 Jan. 2019, www.rxlist.com/ trileptal-drug.htm.