How to breathe in the dark
I sometimes wake up in the middle of the night wondering how I could have done so little with eternity.
Dear Readers of Identity Theory,
I sometimes wake up in the middle of the night wondering how I could have done so little with eternity.
Like, if this space in which we live has been around for countless billions of years, couldn’t we have come up with something better? Shouldn’t I be a better person? Shouldn’t everyone?
The answer, perhaps, is that on a large enough scale, improvement doesn’t exist, that in order for the universe to keep moving without grinding to a halt, we have to allow for an epic, possibly eternal carnival of weirdness and failure mixed with occasional brilliance. It’s the only way to keep existence from becoming one long, suffocating fit of claustrophobia. If we had a goal, I sometimes think, surely we would have already met it by now?
The possibilities of eternity are terrifying, but I’m not sure we can exist without them.
What you may not know about me—what you almost certainly don’t know about me if you met me after the age of 23 (I’m 43, for those keeping track at home)—is that I grew up suffering from epileptic seizures.
A seizure fundamentally involves a disruption in the brain’s electrical activity, and people experience them in many different ways, from blacking out and shaking to becoming absent and not knowing the episode even happened. Mine were far more terrifying than that.
From the ages of 13-18 I had intense partial seizures that often felt like all the brightest and darkest forces of the cosmos found an opening in my head and decided to burst out, like an atom had been split, stopping and distorting time. I’d have to sit down, suddenly, and it took hours to regroup as the nerves in my stomach recovered from the shock. I had these almost every day, sometimes many times a day, for years.
It’s tough to write about seizures because it is like writing about Zen; you can repeat what some purported experts say about the topic and you can have a vague sense of what it means, but you can’t get to the heart of it without seeing it for yourself. And even then, it is a constantly moving target. My seizures were not repetitive; they kept evolving into different forms, so it was a constant challenge to keep up with what was happening or try to understand what would come next.
Dealing with these seizures was hard back then because the internet was not around to explain them to me, and I lived on a farm in Ohio in a town of a couple thousand people with a limited library selection. What I knew then but could not confirm until later was that temporal-lobe epilepsy causes a sense of distortion about the universe and an urge to cling to stability, so many people who have it suffer from hyperreligiosity (extreme attachment to religion and/or athiesm) and hypergraphia (writing all the time). I endured both of those for years, vacillating from religious fanatic to atheist, writing about it all the time, confusing the hell out of everyone around me.
It’s impossible to avoid strong feelings about God/gods/no-god and the universe when it feels like hidden pockets of other dimensions are emerging from inside you on a regular basis. And writing becomes absolutely necessary when you have to get that out of your system.
In the course of that confusion, I learned to meditate. No one else around me had epilepsy or any interest in meditating at the time, so I was on my own with all that. In the early stages of learning Zen it is possible to experience all kinds of additional cosmic weirdness, which may have further loosened my connection to the traditionally experienced world, but since Zen and (most meditation in general) does not emphasize special experience, eventually daily meditation helped process my unpredictable and intense feelings about the universe. I went from focusing on external universal forces (god etc.) to words and ultimately to just breathing as a source of stability.
For a while, in addition to meditating, I was on anticonvulsants that weren’t super effective, but around 1997, in my 2nd year of college, a neurologist hit me with a winning combo that was able to dull more of the terror and reduce the frequency of episodes enough to where I returned to a semi-functional life and graduated from college. Around 2002 I weaned off medication entirely (my decision—but my doctor recognized that medication for seizures is imperfect and can do more harm than good) and have relied on strictly healthy eating habits and regular meditation to stay healthy. Which has pretty much completely worked, with two notable exceptions which I’m not going to get into right now.
One reason I’m sharing this today is that this morning I mysteriously woke up feeling like I was in a bad space neurologically and that I was in danger of having a massive seizure and so I was in bed all morning instead of doing any work. It’s an outlier because I go entire years without even remembering I have an underlying condition. And there’s no direct cause: I slept well and ate well yesterday and I’ve run about 10 miles this week.
But the main reason I’m sharing it is that I feel like it’s important to understand that this website I created 21 years (half a lifetime!) ago was built by a version of myself who was intensely Zenned-out and beyond weird at the time, and it was important to me to create a space that would welcome everyone and not discriminate and that would provide an opening for people to get whatever words out of their systems that needed to come out, their own internal a-bombs, as we collectively reinterpreted the nature of words and power and reality.
It took no small level of madness at the time for my 22-year-old self to hand code HTML on a desktop computer over a 14.4k dialup connection and edit 10,000-word transcripts of author interviews in between reading terrible poetry submissions and writing the earliest version of this batty email newsletter.
Over the years following that time, I evolved a survival mechanism common to many adult humans: boring, safe choices. Simultaneously, the internet got more boring and safe, too, with traffic concentrating in lame social media sites and a bunch of bloggy websites that closely resembled each other. My own urgency to put words out into the world waned as I grew older, and the urgency of publishing a webzine also waned as anyone with basic web literacy could create an online literary journal in 5 minutes.
I decided to bring the journal back now because it seems like I could be doing better things with eternity than playing it safe and keeping quiet. Maybe there’s no point to any of this in the grand scheme, but that is ok. We may as well read and write as best we can while bouncing around this carnival ride.
I wanted to write about epilepsy in today’s newsletter because it’s a topic most people hide and that I learned to hide a long time ago. It is a sort of embodiment of darkness, a perpetual unknown shunned by people who don’t have it and dreaded by people who do. It implies an instability that does not fit with the current cultural goals of working as hard as we can to make a few billionaires as rich as possible while denying our own humanity. The speed of capitalism has no room for people who suddenly, unpredictably fall. Epilepsy involves a sort of sudden ontological shock that threatens the person who has it and, by extension, the culture at large. So it remains hidden, because it is a threat to traditional power and survival.
That’s all I have to say about epilepsy today (perhaps this is a return of hypergraphia, perhaps I am back to seizure mode). It’s the first time I’ve written about it in over a decade, and I’m not sure I’ll write about it again, though I do have more to say on the topic. Stay tuned.
New on Identity Theory
Speaking of many years ago, about 15 years ago, Jane Friedman was our fiction editor and also wrote a column called the Magic Bullet Q&A for Writers. One person wrote to her asking if they could rewrite “Hansel and Gretel.”
I bring this up because this week we published a rewrite of “Hansel and Gretel” by Lille Franks: “The Story of Hansel and Gretel, Told From a Varying Distance.”
Here’s an excerpt:
Farther
In the published edition of Children and Household Tales, the collection of German fairy tales by the famous Brothers Grimm, the two children in the story of Hansel and Gretel are put out into the wilderness by a wicked stepmother. However, in the pre-publication edition, which recorded the stories as they were told with fewer of the brothers’ edits, there was no stepmother. The children were put out by their real mother and father. The brothers considered this version too uncomfortable to share, even though the storytellers knew it. They knew it was true.
Nearer
Of course, you don’t speak about such a thing. You couldn’t speak about it. If you spoke about it, it would be possible, and such things weren’t possible. It wasn’t possible, but it would be easy. All you would have to do is take us into the forest, just like you do every day, and then leave us. The forest would do the unspeakable part. The forest would be the one who would decide and anyway, isn’t keeping us just leaving it to a bigger, darker forest? It wouldn’t be hard at all, not like it was hard to stretch meals for four mouths, to stay calm when we cried and acted up, to remember what it had been like to look at us and feel love rather than inconvenience. Monstrous things were supposed to be impossible and how could it really be monstrous if it was so easy?
Also many years ago, we published two interviews with Susan Orlean (2001, 2006). This week she has a new book: On Animals.
Another new book we’re reading this week is Bethany Ball’s The Pessimists.
You can read about those and more in this week’s new books post.
And as you may have noticed, this week’s newsletter has a new format as I’m experimenting with Substack. My sense is that Substack is more for individuals than publications like us, but I also sense that they don’t know who they are yet, and neither do we, so we both might as well run with it.
Thanks for reading, and sorry for talking about things nobody wants to hear about this time. I promise next week will be much more fun.
Oh, and here’s a subscribe link for those reading this on the web who made it this far and somehow still want more:
Thanks again,
Matt Borondy
Founding Editor
Identity Theory