makalajohnson (@makala johnson) published a blog post · November 2nd, 2011
Epilepsy, Brain Surgery and then, Seizure-Free
We scurried like mice across the street under the cover of darkness, hugging the side of the St. Mary building when we reached it to block the wind as it gusted at 22 below zero. The light from the entrance door called like a beacon, and when we reached it all I could do was give thanks. I stomped the snow off my boots and pushed back the hood of my coat, looking around for some Kleenex. My mom and dad followed behind me as I walked to the check in desk. Five am. One hour til surgery.
We were directed to a waiting room filled with patterned chairs and nervous faces. Dad checked his email, mom knitted, I wrote, all three trying to pretend we weren't scared. All too soon, someone in blue scrubs called my name.
I was diagnosed with simple partial epilepsy when I was seven years old. For eighteen years I switched from medication to medication, none working, all leaving me sick with double vision and headaches, walking in zig zag patterns and downing coffee and Red Bulls as I tried desperately not to fall asleep at my desk. For most of my life I was able to ignore it, my stubborn nature allowing me to push forward, but in the past couple years, it started to get worse. When my epilepsy started to affect my professional life, I knew I had to do something. At twenty five, I had a long way left to live and I didn't want to live it like that.
When I decided to have brain surgery, I knew immediately that I would go to the Mayo Clinic; it's the best, and if I was going to have brain surgery, I was going to do it at the best possible hospital. I went in for testing and monitoring the day after Thanksgiving. I was told to bring a toothbrush and something to keep me entertained for a few days, but it took less than 24 hours to produce five juicy, readable seizures for the 76 electrodes glued to my head. When the neurologist came in to tell me I could go, he said that if I proceeded, there would be two surgeries with intracranial monitoring between. Two surgeries? I remember thinking. He explained that the EEG couldn't pinpoint exactly enough where my seizures originated, so they would take off a portion of my skull, place a grid of electrodes onto the surface of my brain, then reduce my medications to induce seizures for a few days in hopes that they could find the origin point. Still, even if they could find it, he warned, it might not be operable. He asked if I still wanted to do it. I said yes.
January 20th was the day of my first surgery. January 24th was my second. My memories of the days in between come to me in foggy vignettes, but I do remember the doctors who kept me informed, the nurse who massaged my sore back in the middle of the night and the EEG tech who held my hand as I fell asleep on the operating table. I remember the Ethiopian woman who told us about her home as she changed the sheets on my bed, me watching her smiling mouth move as I practiced sitting in a chair and eating on my own. It's been over nine months since that plastic mask was lowered onto my face for the second time, and I've been seizure free since. Not a day goes by that I don't think of it, that I don't reach up and trace the scar that runs in an arc across my head, that I don't feel eternally grateful.
Written and submitted by: Erica Egge