CHEFILEPTIC

28. syndromatic

As I’ve read more and more about epilepsy and seizures, I’ve come across so many vague descriptions and classifications and sub-types and treatment-schemes.  I can’t help but be fascinated by how much development there has been in the understanding of so many different kinds of neurological disorders, even just within my lifetime.

As the worlds of brain-related types of medicine have grown and gradually become more widely accepted, diagnoses have become more studied and argued and sharpened.  Some that have contributed to this realm of medicine have worked to define categories, and to label the persons that fall into these categories as having one or more syndromes.  Usually, as these categorizations become more widely acknowledged, they eventually are labeled with the last name of those who have ‘studied’ them to give them credit for doing so, which is a standard practice in most fields of science.

One classification concept that has caught my attention has been the growing discussion of the ‘inter-ictal’ parts a seizure-afflicted person’s life—all the rest of the living-time between the seizures.  It’s been interesting to me in part because it seems that there’s been a gradually growing acknowledgement that many patients that have seizures also have certain personality similarities, or ‘tics’ (some of which sure remind me of me… not all, but some).

Over the years, history seems to have had both shame and some kind of strange reverence for those that have seizures.  Having the world of medicine acknowledge and focus on our personality aspects (with a scientific approach) seems to have made some headway into explaining why this may be the case.

While some doctors and professors seem to disregard any such generalizations, others have made efforts to categorize certain personality aspects that we seizure patients seem to have in common.

As time’s gone on and more data has been collected, combed through, and discussed, it seems that many voices that have taken part in this discussion have kind of started to kind of agree in a general way about something that (to a layman like me at least) sounds kind of like this:  “people who have regular seizures tend to have personalities that are really ‘strong’ in some notable ways.” 

The words used to better describe exactly which ‘notable ways’ is what appears to be in-flux.

Naturally, I’ve defaulted to using myself to compare and contrast with anything I’m reading about in this area of discussion.  And what can I say, I think some useful headway may have been made that can help expand our understanding of how the brain works (and doesn’t).

Speaking as a subject though, I can’t deny that there’s been more than one described personality characteristic that I’ve noticed I seem to share with others with my realm of medical disorders. 

At one point I read a book called Seized by Eve LaPlante (1993).  This was the first time I was introduced to the concept of a scientific approach to understanding the more generalized commonalities between us seizure-people, with whom I’ve clearly shared some personality characteristics. 

An American behavioral neurologist named Norman Geschwind (1926-1984) had proposed that those of us who had certain forms of epilepsy were likely to have ‘at  least three of these five personality traits’: hypergraphia (meaning you write a lot), hyperreligiosity (meaning you adhere very strongly to your beliefs), stickiness (meaning you tend to get attached or have over-emotional ‘clinginess’ ), a-typical sexuality (meaning you either gettin’ lots or little–usually little), and finally aggression (don’t EVEN make me tell you what that means… haha). 

So, Dr. Geschwind had proposed that if you had seizures, and your personality fit three or more of those descriptions, you were basically classifiable under the syndrome he was proposing should exist with his last name on it: “Geschwind’s Syndrome”.

It appears that, overall, the world of medicine did not jump on board with the generalization he had put together, though it did create discussion and it is still being agreed with and refuted today.  However, the ongoing discussion clearly gives the notion some validity, whether or not the syndrome has been widely accepted.

To me this notion was fascinating.  As I’d learned more through the years about seizures and about those of us who had had them, I’d already repeatedly wondered if our group might be more likely to be in-touch with ourselves, or more out of touch with our worlds, in common ways.  I’d already pondered whether the challenges we face might be likely to inspire us, or enable us to be creative, or motivated us as we’ve learned to make ‘the best of’ our situations. 

Heck, I was also just glad that anybody in the medical realm was even talking at all about the time between a patient’s seizures, the interictal periods. 

Through the years, I had felt more and more like the only aspect of seizures that was ever discussed in most medical literature involved only the episode itself as it occurred.  I knew, however, that we seizure-refugees have to navigate through a lot more chaos in our lives than just during our episodes.  And from what has turned out to be a very unique perspective, I’d like to encourage both seizure-sufferers and those shaping how medicine functions to keep these discussions rolling. 

From my perspective, although Dr. Geschwind may not have made ‘flawless’ observations when he defined his syndrome, he was onto something.

After all, I had to admit as I read Dr. Geschwind’s personality descriptions that at least a few aspects of that list of his were provably similar to myself–if not creepily similar.

First of all, the description of hyperreligeosity seems pretty applicable, not only to my tendency to believe strongly about various things, but also to my tendency to make commitments and to try to keep promises I’ve made, no matter what.

For example:  when I began working on my album Red Dam in the spring of ‘99, I’d decided it was time to make myself a promise, and make sure that I could keep my promises.  I also wanted to try a sort of ‘social experiment’, using myself as the test subject.  I figured this might give me something to write about.

At that time, I had promised to both make an album and to release it.  I wanted to make the best product that I could, and I’d decided that I’d go totally sober for six months to focus on it.  So, I quit smoking weed and drinking completely.  This was before I knew I had seizures.

For whatever reason, during that stretch I’d gotten fascinated (if not obsessed) with fashion.  I was amused and curious about how much effort some people go through every day to impress each-other, and how little others do. 

Also, since I had lived in California I had gotten kind of ‘disillusioned’ by the generalizations that seemed to go along with what had always been my regular go-to format of looking like an easy-going-long-haired-guitar-playing-rock-n-roll-biker-type guy. 

See, where I’d come from, if you looked like a good ‘ole ‘freak’ it meant you might be more likely to pull over to give a stranger a ride, or help change their tire, or pass a joint around a campfire–but there in the Santa Cruz area it seemed more likely to lead people to think you’re probably a loser.  I mean, I remembered that back when I’d first arrived there, someone had warned me to “watch out” because “the hippies around there would dance with you and steal your wallet”. 

Now, I didn’t totally believe that (and I still don’t), but I was increasingly curious:  what would happen if I looked different? 

I remembered being a fat kid (yeah, in the 5^th grade I weighed more than I weigh now and was the fattest kid in school).  I’d grown up with not only with the regular joys of being a fat kid, but I was also one with a name that happened to rhyme with weight.  Other kids mob-sharpened their young rhyming skills on that theme, so once the “Nate inflates his weight” foundation was set up, it didn’t take things long to evolve into some “Nate would like to be great but can’t get a date because he inflates his weight”… anyways you get the picture.

But the thing was, for me as a kid, whenever another kid was nice to me despite my fatness, I knew right away that they were probably pretty cool.  I might not have realized it quite yet, but that mechanism was somehow kind of helping me ‘filter’ the ‘nice’ kids from the ‘mean’ ones.  It was helping me make true friends that cared about my mind, rather than just making choices based on what other kids would think.

Since I’d gotten to California, though, I had gradually gotten more and more resentful of being called ‘bro’ or ‘brotha’ as I got hit up for something by whatever hipster-looking-panhandler.  I remember as my old bandmate Jon had described his frustration with this culture-shock we were experiencing when we first got to the Bay Area from Michigan; he had eventually gotten annoyed by it and he’d reply with “I ain’t yer brother, man”.  So, starting back then, hearing “brother”’ had come to mean “look out, I’m gonna hit you up for something”, and just because someone looked like a hippy didn’t mean I could just assume someone was ‘kind’.

Don’t get me wrong, I knew that there were still some true-hearted hippies out there that weren’t just bums—possibly even the majority.  There however, just because somebody looked like someone that might dig the same music as me or whatever, it just didn’t mean they could automatically be trusted. 

I had realized that some of this kind of disillusionment just goes along with getting older and becoming less naïve, but this was a more extreme kind of culture-shock, and I had discussed this realization and over time and had validated it with numerous people that I’d gotten to know who had migrated to that area from elsewhere.

So, I figured I’d wear the same uniform every day for a while.  I decided I’d buy clothing that was all the same color, so it could be totally interchangeable; easily washed and put away so I could spend minimal time thinking about what I would wear on any given day, and spend a maximum amount of time working on music. 

I went to a second-hand store and bought all navy-blue clothing—the shade mechanics often use.  I promised myself that I would not stop dressing this way until I had officially released my album… with a CD release party supported by a band.

I got rid of (or stashed) all my old clothing, and then I shaved my head.  I hadn’t gotten a haircut since my Aunt Kitty had cut it back when I was like twelve or something, and it had grown down to my mid-back for years.  Now though, I wanted to start a new routine, which I wanted to be able to handle completely on my own–so I cut off my hair and began to shave my head completely bald every day.

Well, I had come up with this whole idea before I knew I’d start having seizures that would bring on so many unexpected setbacks.  It took me much, much longer than I would have ever imagined to finish and release the album, but I still wouldn’t give up on my promise.  I ended up wearing blue for seven years. 

One friend I made during that time, my buddy Marco, always called me ‘Mixta Blue’ (as in, Mr. Blue).  I remember thinking that had a nice ring to it, maybe for a sort of alter-ego rapper-producer-type figure.

I did the bald thing for two years, then decided I was through with that—it cost time and money I could be spending on music stuff, after all.  I finally let my hair grow out again, and by the time I eventually had the CD release party, it was as long as it had been before I’d first shaved it off.

Now, how many other people have I known that’ve made any similar commitments and done anything comparable to wearing the same color every day for seven years just to fulfil a promise they had made to themselves?  Well, I admittedly haven’t regularly hung out with many people that tended to adhere to strict religious or cultural dress codes, but within what was my day-to-day community I gotta admit that such behavior might have arguably been a little… unusual.  Maybe even hyperreligios.

And how about aggression?   I’d have to say this one’s probably the least like me out of the list.  I mean, I’ve stood my ground a few times, and I’ve gotten pretty damn mad a little once or twice, but really, I’ve mostly stayed out of fights and jail and stuff, so I don’t see myself as being that outwardly aggressive.  I mean, I can usually get by with just using some intimidation and I’m big enough that it’s been effective enough, but when I think of aggression I think of being ready to hurt other people (maybe to get want you want for yourself), and that’s not really me.  I figure I’d rate more towards ‘passive’ on the aggression-type chart.

With stickiness I’d just have to say that for me, family and true friends really are the most important part of being here in this life.  I have managed to make sure a few other people in my world know they’re important to me and I think they really believe me when I tell them so, but I have a lot of guilt because I’ve done a lousy job with keeping up with way too many people that I really do love and care about. 

This is a vicious cycle for sure, and I’ve been convinced before that this might have been part of a downward spiral that could have increased my likelihood of having seizures—I’d feel bad that I forgot to return a call or remember a birthday or something, then I’d forget another and another and then I’d have these cycles where I’d start remembering whole batches of these failures that I was trying to forget about.  Naturally, this could have had a direct impact on my sleep and food intake patterns, which could have led to more seizures.

Having a lousy memory can cause a person that has seizures, and those around them, to see them as selfish, very quickly.  Of course, when someone is important to you, you remember them, right?  And you remember mutual experiences you shared with them as well, right?  Of course you do.  So, when you have forgotten to ‘reach out’ to them, it means that you don’t care enough about them to remember to do so, right?  It’s a natural, logical assumption to make.

Well, if you had burnt out a few circuits in your brain since you last spoke with someone, you might have physically affected the part of you that holds info about them, or the parts that allow you to access these memories.  Either way, as the ‘forgetter’ it’s hard to separate what part of forgetting about any detail about a friend or loved one is your fault because you are a selfish asshole, and what part is because you maybe didn’t breathe for a while recently.  So, I feel like I’ve got the stickiness-like tendencies–whether I show them well or not–I still have the core intentions.  I think this is part of what motivates me to write songs, and to love so many songs others have written for that matter.

And that leaves the a-typical sexuality. 

I’d never planned on being a lonely guy–but then I never planned on plenty of what would happen.

Right when I got to California back in ‘95, I’d dated a little.  During the first couple of years I was playing in the old band that I had moved out there with, I was more of a ‘social’ person than I ended up being by the time I learned I had seizures a few years later.  At some point I had a short relationship (we were together for six weeks or something), but then I found more and more as time went by that I was wading through some really fucked up drama and I just couldn’t justify bringing down anybody else with it.  So, I spent most of my ‘prime years’ alone—sounds like that ‘a-typical sexuality’.

A few times I had read the generalization that people who have seizures are more likely to stay unmarried, but I found that this was actually part of the ‘official’ discussion about seizure-afflicted people’s personality traits.  The peer-reviewed journal Epilepsia had published the results of a study done back in 1980 that compared marital status and fertility for 100 epileptic males and 100 epileptic females, and found that the marriage rate among the male patients was 59% compared to the expected ‘norm’, and among females it was 83%.  Many other discussions and studies have since looked at various strata of the population (including more data about age groups and cultures), but that study seemed pretty ‘middle of the road’ among what I’d seen.

Apparently, it’s also been repeatedly noted that the younger a person is when they are first diagnosed with seizures, the more likely they are to stay unmarried.  Anyhow, it seemed I was not the only person to find themselves alone for what appeared likely to be the some of the same reasons. 

I can say this—if anyone had told me in my younger years that I’d end up spending over thirteen years in a state of constant celibacy, I would have told them to fuck themselves for sure.  I was plenty horny from the time I was a tot right up to right now as I type, and I never saw myself as someone who would ever end up behaving like someone who is somehow ‘removed from society’ or ‘planning to die alone’.  But more and more, that was my pattern.  This would perhaps arguably be medically classifiable as atypical.

I had just realized that it would not be fair to ask any lady I loved to be my wife when I did not know what would happen to me and when.  I’d realized that if I did fall in love with someone, she may have a child, and then I would have to face the fact that I could unintentionally hurt this child, or fail this child financially, or leave the child’s life when they were still very young.  It seemed like falling in love would likely end up leading to sadness for a lover or a family, even though I knew that sadness is not what love was supposed to bring to our lives.

So, I had just stayed a bachelor and kept myself busy with music projects.  I didn’t want to share all the drama that came along with my own strange and dangerous territory with another soul or to ‘bog them down’ with it all.  I had never intended or set out to be a lonely person, but it may have arguably been a classifiably extreme way to live.

And as I learned more about the ‘tics’ of other people who have had seizures, I realized that maybe some of my life’s patterns had in fact followed some of those now-classifiable and increasingly discussed ‘syndromatic’ trends after all—even if some doctors out there may not think such descriptions are valid, or such labels are in fact worthy.