It was only about five seconds, though my life has not been the same ever since then. The date was Sunday, August 2 in 2009 at about 11 o’clock in the morning. To tell you the truth I do not even remember it, yet there were over one hundred witnesses to it. Why in the world were they making such a big deal about me getting lost in my sermon? Certainly other clergy had bumbled, stumbled, fumbled, flat-out forgot their place while preaching. What was the big deal? This was really about my first time since being ordained as an Episcopal priest that such a thing had ever, ever happened. I was embarrassed. And that was about it.
People, however, were either avoiding eye contact with me or asking “Are you all right?” at the conclusion of the service. I am not sure what expression my face was displaying but my mind was churning in total confusion – total confusion. In the midst of the misunderstanding, I hastily developed a plan. There is nothing wrong with making plans, the persistence of my plan-making was to regain control in the nauseating gush of confusion. So I went to CVS to see if a prescription for another family member was ready. It wasn’t. As I waited, there was that Sci-Fi, odd-looking chair designed to take your blood pressure and pulse. It was time to put into place my plan. Taking a deep breath and trying to look both confident and casual, I discretely sat down in that aching chair as a black armband squeezed itself in a boa constrictor-like manner around my left arm with the following numbers displaying themselves on a small screen: 150/100 and 90. Blood pressure and pulse were still both that high two hours after the episode.
“The episode” is what I called it when talking with my spouse, Anne upon returning from CVS. She questioned me in more detail about what had happened. In all honesty, I simply did not remember. This lack of remembrance advanced into a quick call to my Primary Care Physician. The next thing I knew is that I was sitting in a Neurologist’s office, who was ordering an EEG and a MRI and a CT Scan. All this for my episode! You have got to be kidding.
All of those advanced medical apparatuses, nevertheless, revealed a big black spot in my brain that had hemorrhaged. The big black spot was called a Cavernous Malformation – my brain was bleeding. The episode, which you all have figured out by now, was a seizure, a Complex Partial seizure at that. Furthermore, the seizure was not a simple five seconds of getting lost in a sermon; it was at least 45 seconds of simply standing in a pulpit and unsystematically tapping the wood and not saying anything. As I wrote earlier, life has not been the same since that August Sunday in 2009.
Medical procedures were seemingly endless from that time. Let me just write for those of you who feel absolutely alone in your neurologist visits, prescription pickups of multiple anti-seizure medicines, and possibly neurosurgeries, you are not alone. I could be that poster child for medicines and surgeries that did not work at first, but then finally the combination of four distinctly different brain surgeries and two horrible anti-seizure medications (side-effects) have helped to control my seizures. Though they are not seizures, I still am susceptible to a medical condition called Periodic Limb Movements in Sleep. This mimics a tonic-clonic seizure, but it is not a seizure at all. My legs flop in my sleep; this can last up to 30 minutes. In the morning it feels like I have been in fight (that I lost).
Really the whole sojourn with seizures and epilepsy is a fascinating and complex grief journey. I have looked back on the last 11 years to see a classic pattern of grief: Denial, Anger, Bargaining, Depression, and Acceptance. It is not always that straightforward, of course; there are good days and bad. Relationships, however, inevitably change. My marriage to Anne has grown stronger and never would have survived unless she kept those literal vows of “in sickness and in health” from the marriage liturgy in 1985 and took care of me “in sickness” when I could not take care of myself. Also, our four children had to grow up differently from their peers while their dad was taking his multiple rounds of medicine during “drug time” that did not work since I was in the bed still shaking from two to three nocturnal tonic-clonic seizures a week. Friendships fell apart and were rarely replaced with new ones. There was also my feeble effort to make everything return to normal in my vocation as a priest. You know it’s hard to go from being recruited by other churches to not being able to even volunteer at others. Word got out that I had epilepsy. And that’s a loaded word. Maybe these experiences sound more like complaints; nonetheless, you may have gone through something similar and are relieved that it is not just you who suffers with seizures and the whirlwind of uncertainty that accompanies them.
In conclusion, let me simply write that epilepsy is tough. Seizures stink. People without epilepsy will rarely understand what it is that we are going through. You are not, however, going through this alone at the Epilepsy Foundation of Southeast Tennessee. There are people who genuinely care. It is not just a job, nor is it about being on a Board of Leaders, or even is it about volunteering. It is about people who sincerely care about other people. You have your own epilepsy story. We need to hear it; you need to tell it.
George Choyce is a member of our Connections support group and has written a book titled: The Potter's Wheel: How Epilepsy Changed My Life. We are grateful to be able to share his story here. If you'd like to learn more about George's story, you should check out his book, or come and join us at support group sometime!