Little Kristine at camp

One of the things I wanted to get down, before I have surgery, are the answers to some of the questions that I’m often asked by doctors. One of them has to do with describing “the first seizure you remember.”

The reality is that most people that have the type of epilepsy I have (temporal lobe epilepsy) don’t talk a lot about their seizures, because the seizures are subtle, confusing, and they make us feel like we are crazy. My seizures begin in a very specific part of my brain.  This manifests as an intense “thought,” accompanied by a strong sense of deja vu. It was only a few months ago, when I did an extended monitoring EEG in a hospital, that I came to understand that this unique “thought” and “feeling” were indeed, an aura. An aura is a small, initial seizure.  In my case, after the aura, I have about 30 seconds  before I have a full, grand mal seizure.  I learned this because, in the hospital, I had to push a button every time I thought I might be having a seizure, and this “button pushing” exercise confirmed that I was right — every time.

Why didn’t I figure the seizure business out sooner? Because I’ve had the experience of the strange “thought” and “feeling” for as long as I can remember. Like many people with epilepsy, I never had a grand mal seizure until I hit puberty, but the “little” ones have always been a part of the way my brain works. So I never talked about it because I knew, on the one hand, that something strange was going on, and yet, this “strange thought” was also totally “normal” to me.  How do you know something is a seizure when it’s something your brain has always done?  It would be like getting a fish to understand that it is wet — how would it know anything else?

The first really memorable moment I had that was, most likely, a larger seizure, occurred when I was at a summer camp I regularly attended as a child. Camp Easterseal (later renamed Camp Roger Larson)  was on Lake Coeur d’Alene and was a camp for kids with special needs as well as kids without (back then, we thought I was one without special needs). Every year, we would go on an overnight and sleep outside under the stars. The year I’m remembering was one where I had befriended a girl in my cabin named Peggy. Peggy was hearing impaired, had seizures, and had brain damage that resulted in her having little ability to perceive physical pain. This meant that others of us would stick close by her, because she often got hurt. This particular evening, I was sleeping beside Peggy, watching over her (in my little sleeping bag with the cowboy flannel lining!). She was very scared of being out doors, and so we were snuggled up close.

All of a sudden, I remember having this strange sense, actually, a sense of absolute sureness, that everything was, is, and always will be connected to everything else.  There in my little cowboy sleeping bag, I knew, in that moment, that there was no difference between me and Peggy, no matter how “different” we seemed on the outside.  I remember feeling connected not only to  all the other sleeping campers, but the sand on the beach, the dark trees, the vast number of stars in the sky, the moonlight on the water, the endless waves.  And what was strange was that it wasn’t like having a “thought” about this, but it was an actual, physical feeling, deep down in my bones, that this was real — as real as feeling my breath moving in and out of my body.   There was a sensation of the “terrible beauty” of that knowledge — it seemed “too big” to think about for a little girl.  I also remember the strong feeling that I now know is called deja vu (but had no name for back then).  It was as if I not only knew this truth in that moment, but that I had known it  for a very long time before that moment.  I later wrote in the little hot pink vinyl diary I kept back then that it felt like “forever knowledge,” something I’d known before I had a sense of being me.

Later on, I would have that same sensation on a fairly regular basis. Years later, when I finally had my first grand mal seizure,  I finally came “out of the closet” with this strong sensation to my mother, describing to her that I was having this  thought/feeling that was a “theory about how to do anything better” . . . which had to do with knowing about the deep connectedness of things.  I now try to imagine what it must have been like for my wonderful mom trying to figure out what the heck that was about!  Back then, there was little understanding of epilepsy, and it took years for me to be diagnosed as having epilepsy (I was 18 when it was first suggested).

It turns out that what I am describing — the deep sense of universality, the strong emotion, including terrifying fear, the sense of deja vu, are all classic symptoms of temporal lobe epileptic seizures. You can break it down into some of the unique features of the temporal lobe, including the amygdala — it’s a busy area of the brain that processes language, memory, emotion, a sense of time and place, and, to some extent, a sense of connection.  It is probably also understandable why many of us who have this type of epilepsy seem to have a strong spiritual bent — I believe that spirituality and a sense of connection to that profoundly beyond ourselves, gets hard-wired into us, not as an idea, a theoretical belief, or a wish, but as a sense of something known as deeply and surely as any other experience.

I think, for many of us, it is a relief when we finally share these stories of seizures with others — others with epilepsy and/or neurologists — and they say “Oh yes, we recognize that and we’ve heard that before.” (Code: “You’re not that special!”). It’s a relief to know that others have had this same type of experience. And yet, it’s also part of the reason why Hippocrates first named epilepsy “the sacred disease.”

I have no doubt that these experiences have shaped me into the minister and yoga/Nia teacher I am today. That sense of the embodied Sacred is one I’ve always been trying to explore, explain, understand, and live out of the secret place it so often dwells and into the light of every lived day.

I hope that others who have epilepsy will take time to write about their experiences of seizures. It is so helpful to others who go through the same thing, often feeling very alone.