Eight years ago today, November 7, 2004, I had my first grand mal seizure and was diagnosed with epilepsy. Interestingly enough, it was on the day that John Kerry conceded the presidential election to George Bush. Though I was not a fan of Kerry, at that time I was strongly opposed to Bush. When I learned the news I was very upset and went into the kitchen to tell my wife, Shelby, the bad news. The next thing I remember I was sitting on our stairs with paramedics looking up at me and asking questions. Shelby was telling them this strange tale of what happened that involved me throwing my head back and making some loud groaning noise before falling to the ground convulsing. Apparently, I got up at some point and yelled before she sat me down on the stairs.
I was in a fog for the whole ride to the hospital, and really didn't know what was happening. In the ER a doctor came in, asked some more questions of Shelby, then told me I had had a seizure. I was taken back by the news, but instantly remembered the feeling I was feeling right before I blacked out. It was the same sort of feeling that I had been experiencing periodically earlier in the year. I referred to those experiences as Revelation Spells.
A typical Revelation Spell only lasted a minute or two and felt like I was having a divine revelation. Everything made perfect sense, finally. I was filled with a sense of joy and relief, and I felt warm and tingly all over. During these spells I would lose control of my thoughts and they would just drift along as I stood by and watched them on the periphery of my awareness. After the feelings subsided, I was never able to remember what thoughts had gone through my head. My assumption was that the key to all of life’s questions was contained in those thoughts that floated by. Determined to capture the truth, I attempted on a few occasions to remember the thoughts that passed through during a Revelation Spell. Though I could not remember the thoughts, I could tell that they were insignificant, mundane and just random. I was able to conclude that the sense of revelation was not linked to the thoughts themselves.
After the initial big seizure, more followed. If you have two or more seizures you are considered to be epileptic, which became the label for my condition. The doctor told me that my revelation spells were actually partial complex seizures affecting the left temporal lobe of my brain, which was a bit of a let down. However, the mystery still lingered. Only 30% of all epilepsy cases have a known cause, and I was part of the 70% where no cause for the seizures could be found.
I was a bit reluctant at first to take drugs, but grand mal seizures are very unpleasant and the need to stop them outweighed my desire to avoid being on medication. It was a physically and emotionally challenging time for both Shelby and I, but it marked the beginning of a change in my course in life. I suddenly had an uncontrollable desire to read books on various subjects that had never interested me, and I was particularly drawn toward books on spirituality. Once I ran across the idea of enlightenment, I knew that epilepsy had come into my life so that I could find the truth of my own identity. In fact, I came to view those partial seizures as early awakenings resulting from the disassociation from thought. I also believed that enlightenment was the cure for epilepsy, which is entirely possible.
It took a while to get my medication to a point where the grand mal seizures stopped, but I continued to have the partials (as I called them), which just rendered me unable to speak for a few moments and sometimes had some uncontrolled jaw clenching. I was also having what they call auras, which were more like feelings of nervous energy about something that was about to happen (no longer any feelings of euphoria).
Anyway, something very interesting happened yesterday, on the eve of my seizure-versary. I was out running an errand and called home to ask Shelby a question. She told me to turn on the radio and listen to Fresh Air where Terry Gross was interviewing Dr. Oliver Sacks. Dr. Sacks is a neurologist whose research interests include disorders of perception, memory, consciousness, hallucination, migraine, epilepsy and other neurological conditions. He has written several bestselling books, such as Awakenings, The Man Who Mistook His Wife for a Hat, Musicophilia, The Mind’s Eye, and Hallucinations, in which he explores what it is like to live with various neurological conditions.
It was a fascinating interview, but I was especially touched when Dr. Sacks mentioned epilepsy. He said that it was often referred to as the "sacred disease" in olden times, and that many people with temporal lobe epilepsy had what he called ecstatic seizures that brought about feelings of divinity and euphoria. This sometimes led people with no prior religious orientation toward spirituality. It was very moving for me to hear him talk about the profound nature of this sacred thing we call epilepsy. It felt validating to have an expert in the field convey fascination with this mysterious dis-order, and really reaffirmed my own love of this beautiful mystery happening.
Labeling dis-orders is a necessary way to communicate and study such phenomenon, but it also reduces and diminishes their profound nature to just a word. Dr. Sacks knows from first hand experience the inexplicable nature of sensory hallucinations, which makes him a much more interested, as opposed to most doctors who just write prescriptions with little or no interest in the experiential nature of it all.
To make a long story short, I spent three and a half years unable to drive because you have to be seizure free for six months before you can drive again, and it took that long for me to totally rid myself of them (being forced into the passenger seat was just what I needed though). I’ve been seizure free now for around four years, but I am still taking medicine. All in all it has been a wonderfully transformative experience that I wouldn’t trade for the world. I feel truly blessed in so many ways (loving wife, precious daughter, wonderful and supportive family, etc.) but I’m blessed to have been touched by the “sacred disease,” which gave me a foretaste of awakening. Life is good, and always has been even when it didn't seem like it.
Peace,
Trey
