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Neurology Now:
doi: 10.1097/01.NNN.0000387775.18197.ba
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Speak Up: Keeping the Faith

MEYER, JOHN-PAUL

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John-Paul Meyer is the founding pastor of Holy Cross Lutheran Church in Rocklin, CA.

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Abstract

My journey with epilepsy has tested and strengthened me.

I've always considered myself an optimist. As the pastor of a church I helped found in Rocklin, CA, I spent many years counseling people through difficult times in their lives—when they were diagnosed with terminal illnesses, lost loved ones, and struggled financially. I told people that in dark times we must trust God has not abandoned us. Faced with my own crisis, I realized just how difficult it is to follow that advice.

Nearly 10 years ago, at the age of 52, I went to the market to buy groceries for Easter dinner. With no known history of a neurologic disorder, I experienced a grand mal seizure in the middle of the store. Thirty-five minutes later, I awoke in an ambulance, covered in blood.

Several days and many tests later, my wife and I learned I had epilepsy. Without even realizing it, I had been suffering from epilepsy for some time. While reading from the Bible, I would joke about reading sentences backwards and misplacing words. Although I was conscious and not convulsing, the seizure activity in my brain affected my thinking.

I left the hospital scared but determined to continue with my life. My doctors decided the first course of treatment should be anti-epileptic medications. Unfortunately, I didn't respond well to drugs. I suffered terrible side effects, including a rash, slurred speech, and loss of motor control, and slept the majority of my days. I tried to work part-time at the church, but my health prevented me from being an effective spiritual advisor. I became isolated and depressed.

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Epilepsy also had an enormous impact on my marriage. My wife constantly worried about my health and our future. I worried about the stress that my condition was having on her. I had envisioned our retirement as one filled with traveling, relaxing, and socializing with friends, and didn't want my health problems to change that.

Six years after my formal diagnosis, I was still suffering many grand mal seizures. My neurologist suggested that I receive a vagus nerve stimulator (VNS) implant. I was worried about having a wire attached to a nerve in my head. I still skied, played tennis, and rode a bicycle. What would happen if I fell?

But while walking to work during this period, I had another grand mal seizure. My last conscious moment was walking on the left side of the street. When I awoke with the paramedics in attendance, I was on the right side of the street. At this point, I decided to try the VNS, which has been God's gift for the darkness of epilepsy.

Since being implanted with the device in 2005, I have only experienced three seizures. My implant came with a beeper-sized magnetic device that can help to stop a seizure if I feel one coming on. This is very empowering for me. I realized I had been lacking a sense of control over my life for some time.

I recently completed a 550-mile, 12-day bike ride through the states of Washington, Idaho, and Montana with friends—just the kind of trip I imagined taking in retirement. That bicycle trek was symbolic of my journey with epilepsy. At the beginning of the trip, I was full of energy; likewise, after being diagnosed, I was eager to get well and unaware of the toll that epilepsy would take on my mind, body, marriage—even my faith.

The journey from the middle to the end of the cycling trip was difficult. The terrain was rocky, and I was tired, but each night my friends and I spoke about the day's events over dinner and planned our strategy for the next leg of the journey. Each time a treatment failed to control my epilepsy, I would rest, discuss my options with my neurologist and my wife, and plan the next phase.

Gaining control of my health and my life was like cycling up the most difficult hill during my trip. I pushed myself when I was utterly exhausted. But when I reached the peaks of those hills, I was able to see what I had just accomplished and look forward to the future.

©2010 American Academy of Neurology

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