My Brain, Interrupted
© Copyright 2020 by Suzanna Price
My epilepsy was diagnosed 18 years ago, at age 23. I was getting my feet wet in the working world and was dating a wonderful man who would become my husband; I was flying high with the excitement of our love and ready to begin a new chapter of life. The onset of seizures brought me crashing down and shook me to the core.
They began very randomly, and multiple brain tests showed scarring in my left hippocampus. It might have been caused by a terrible car accident I’d had when I was 19, when I rolled over and cracked my skull open. Head injuries vastly increase the risk of developing a seizure disorder. I began the long, tumultuous journey of living with a chronic condition and searching high and low for a treatment that would work.
I went to neurologists all over the city; we live near Denver, Colorado, and we fortunately had many great doctors in the area. But epilepsy is notoriously difficult to manage, and for someone who loved being in control and being fiercely independent, I felt like I was being robbed. One drug would seem to work for a while, then it wouldn’t. We’d shuffle things around, try a higher dose, add on, take away…I was always on two drugs at a time, and still couldn’t get the seizures fully controlled.
I tried everything, traditional and alternative treatments. I had the same outcome when I went to acupuncture: It helped for a while, then it didn’t. The cost of living with this was staggering, and not just to our checkbook.
There always seemed to be a cloud hovering over me; I was fearful of the next seizure coming. The worst memories I have are the seizures that caused me to lose bladder control. And when I had one, my brain went into a kind of re-boot, a foggy confusion that would last 10 minutes or a few hours, depending on how severe it was. I called my husband from the bus panicking after a seizure, not knowing where I was or where I was headed. Then I started wearing a medical alert bracelet; it was just terrifying for both of us.
I questioned everything I’d dreamed of doing and becoming; I questioned having children though I yearned to be a mom; I questioned God and cried many tears. We never gave up on becoming parents and ultimately chose adoption.
With time I softened and had less trouble asking for help. I was determined not to be overcome by the epilepsy. I was learning a tough lesson in choosing my attitude, the one and only thing I could really control. My faith carried me, and I had to humble myself and accept the help I was offered- sometimes from people I barely knew, who became unexpected friends. I had so many conversations with my “drivers”; some lighthearted and some quite poignant.
I finally found a great team of neurologists at the University of Colorado medical campus. I had many brain tests, inpatient brain studies, and one or two double-blind studies. I was on a combination of drugs that had not ended my seizures, but kept them to a minimum, when my neurologist told me about a new possibility: A laser surgery that could eliminate my seizures by killing off the tissue that was misfiring. It was much preferable to the former surgical option of a total lobectomy. First, I had to undergo more testing to find out if I was a candidate, which proved to be more difficult than the surgery itself. I had numerous holes drilled in my head, dozens of wires inserted, and my meds were stopped in order to provoke seizures, thus specifying a pinpoint target for the laser.
Finally, I heard what I’d been hoping and praying for: “You are a textbook candidate.” My excitement about a true healing far outweighed any apprehension.
My surgery was a success and I was able to get behind the wheel for the first time in 16 years. I felt as giddy as I did when I was 16 years old!
Though I’ve dealt with some memory issues since the surgery, nothing can outweigh the joy and the sensation of freedom I feel. I can honestly say that living with this illness changed me for the better; it enlarged my compassion and gave me a greater empathy for other people’s pain.
I am a mom, a blogger, (Epilepsyconquered.blogspot.com) an epilepsy warrior, and an outdoor lover. I live near the beautiful Rocky Mountains in Littleton, Colorado. My husband and I have journeyed through this together since we were engaged, and I hope you find some hope and some light in the positive outcome of my life with epilepsy.