My Second Seizure

April 9, 2014

I’m currently preparing for a sleep deprivation EEG. Which means that I have to stay up for 24 hours prior to the EEG. In other words: 

nosleep

Anyway. Here’s a little something I wrote (and failed to sell) about the reason I’m going through all of this brain testing/torture right now:

My second seizure was a bit of a sleeper hit. I initially wrote it off as a dizzy spell brought on by a stuffy room, an open bar and a less than adequate amount of food in my stomach. So, when it passed, I simply rolled up my sleeves, downed a glass of water and decided to stay for another round of Hello Kitties.

It wasn’t until the subway ride home that I started to piece together the symptoms: The dizziness. The headache. The blurring vision. The racing thoughts. The sense of deja vu so prolonged and detailed that it had me temporarily convinced that I was, in fact, living my entire life for the second time. The correlation between epilepsy and that pesky little autism spectrum disorder of mine.

As soon as I made it above ground, I called my mom and calmly explained the situation to her. “I don’t want you to worry,” I said in an even and perhaps clinical tone. “I’m OK. But I think I may have had a minor seizure. I’m OK, though. And you know how much of a hypochondriac I am, so I must really be OK if I think that I’m OK.”

I gave my husband a similar speech when I got home. I e-mailed my therapist, an expert in ASD, and asked him if he could recommend a good neurologist with a background in the autism and epilepsy connection. Then I tried to go to sleep.

My first seizure was hilarious. Not just in retrospect, either.

I was thirteen years old and in the middle of a sex ed class. I had somehow, in my infinite powers of hypochondria, managed to convince myself that I had immaculately conceived gonorrhea and was in quite a panic over it. “How will anyone ever believe that I’m still a virgin?” my mind raced. “How did I get an STD without sex? My name is going to be in all of the medical journals!” Even as everything went blue, a part of me was able to appreciate the absurdity of the situation.

I was laughing when I came to, toppled over on the floor along with my desk and surrounded by a bunch of feet that were, for a moment, the funniest thing I had ever seen. I laughed at my friends and their trembling concern. I laughed at my enemies while I could, because I quickly realized that they’d probably be laughing at whatever had just happened for the rest of the school year. And I laughed at the teacher’s desperate attempts to convince everyone that the blood running down my arm was actually marker left over from the arts and crafts portion of our sexual education.

It’s anecdote that I’ll unleash with the least bit of prompting.

I haven’t told many people about my second seizure, though. I’m still not sure what to make of it. At thirteen, I still felt omnipotent to a certain degree and having a seizure was almost cool because it made me feel closer to Dostoevsky and Ian Curtis. At thirty-one, I’m more aware of my mortality and of the quirks and neurodevelopmental disorders that make me slightly more imperfect than the average human being and the idea of going through that again, especially in public, unnerves me in a way that no vague connection to Russian writers or Mancunian rock stars can assuage.

I’m not even sure what to say about it, really. This became painfully clear during a recent scare at a mall. Some nice young man was trying to demonstrate his herbal hot and cold therapy packs to me when I suddenly became overheated and dizzy. I panicked, terrified that it was about to happen again.

“I’m sorry,” I snapped, handing the pack back to him. “I have to go sit down. Now.”

“Is it the herbs?” he asked kindly. “Are they bothering you?”

“No, it’s not that,” I said, struggling for the kind of explanation that would be appropriate for the situation. I quickly scrapped “I don’t want to have a seizure. Again.” for its bluntness. “My anxiety’s just a little bit out of control because I’m autistic and I can’t stop thinking about the correlation between ASD and epilepsy and also it’s loud and bright in here” contained too many words and too much information. “If I’m lucky, I’m just having a panic attack right now” felt too melodramatic.

With nothing better coming to mind, I settled on “I um… I have… issues.”

After I found somewhere to sit down and reacquainted myself the finer details of respiratory function, I concluded that “issues” was a bit obvious and overdone, but it was as good a description as any.

My third seizure is pending.

1. Anything.

It’s, like, totally interesting that Sheila Heti’s friend/character Margaux gets “really excited thinking about autism” because she thinks it’s “maybe sort of wonderful… to lack an overwhelming empathy” in How Should A Person Be?

Because I get really excited thinking about navel-gazing neurotypicals and think it would be maybe sort of wonderful to be that self-involved and lack an overwhelming empathy.

I feel like a lot of people assume that Asperger’s Syndrome is all about talking like a robot and having problems with empathy and being good at math. But the truth of the matter is that, sometimes, it’s just about not realizing that it’s not entirely appropriate to tell the nice old men in your lobby about the time that you drank a litre of chocolate milk and vomited in a Niagara Falls parking lot until you’ve told the nice old men in the lobby all about the time that you drank a litre of chocolate milk and vomited in a Niagara Falls parking lot. And described the consistency of your vomit.

the_dinner

 

 

In theory, The Dinner, Dutch writer Herman Koch’s internationally bestselling and much ballyhooed novel, was right up my alley. Dark and twisted? Sign me up! A brutal satire of bourgeois mores, or lack thereof? Be still my snotty proletarian heart!

I immediately logged into my Toronto Public Library account and put a hold on the book, because the only thing I love more than sinister satire is tending to my immaculately curated hold list at TPL (and because all the cool kids memorize their library card numbers and check on their account status multiple times a day). Late last week, the magical and perfect library dropped a copy of the book into my hot little hands.

It all started so well. While I didn’t think that The Dinner was entirely living up to the massive hype surrounding it, I was enjoying the book and was tearing through it, eager to learn more about the terrible incident at the heart of the matter and to find out how Koch’s collection of imperfect characters would handle it. And then, on page 185, something terrible happened.

That’s the page on which Paul, the book’s semi-reliable narrator who has been oscillating wildly between dickish and violent outbursts, goes to see a psychologist. That’s the page on which this paragraph shows up:

The psychologist had mentioned a name. A German-sounding name. It was the surname of the neurologist who’d had this particular disorder named after him.

My immediate reaction was a Tony Harrison-esque “Oh here we fucking go…”

Then I caught myself. This was clearly just part of the satire, right? A riff on the way that middle and upper class white dudes use Asperger’s as an excuse to be giant, unabashed assholes?

A quick Google search told me that I was giving Koch far too much credit.

 Here’s what he told Untitled Books about Paul’s disorder:

“It was going to be a real affliction, and then I thought if I name it in the book, then it’s no longer fiction. People will think it’s this or that, and then doctors will say actually in this condition people are not really that aggressive. Of course I had in mind something like Asperger’s, and the indifference to human suffering that entails. But Paul goes beyond that: let’s say he’s very active in his lack of empathy.”

And here’s what he said about it in an interview for the Delft University of Technology:

 “I was deliberately vague about that. I considered certain autistic disorders, particularly Asperger’s. After all, he is rather indifferent about what happens to other people. But if I had stated this explicitly in the book, people would have said, ‘That’s a very crude caricature, people with Asperger’s don’t behave as aggressively and unpredictably as this fictional character!’ I had no wish to engage in discussions of that kind. However, I did consult an expert about whether someone’s DNA might show clear evidence of such disorders. He told me that this is not yet possible, but that it will be in five years’ time. So that’s the only bit of science fiction in the whole book.”

So, you know, he wasn’t explicitly saying that Paul had Aspeger’s. But obviously he was thinking about Asperger’s. He didn’t want to come out and name it, though, because then people might get all uppity about the characterization.

That’s when The Dinner went from a book that wasn’t to be taken lightly to a book that wasn’t to be taken lightly Dorothy Parker-style.

I finished reading it, because I have an obsessive need to finish books, even when they’re awful and written by Charlaine Harris, but it sucked all of the fun out of it for me. Suddenly, the whole experiment felt incredibly half-assed and facile. The nature vs nurture theme reminded me of something I would have written in high school (or at least somethingI would have written in high school if there’d been an awesome Skinny Puppy on the topic to quote at length).

I’m all for fiction and creative license. Really. My verisimilitude preferences are pretty flexible. They’re probably more strident than those of the most out-there aesthete, but they’re certainly more open than my otherwise Aspergian need for rules and order would suggest. There’s a difference, though, between indulging your muse and letting it run wild like an overly permissive parent who doesn’t want their special snowflake hampered in any way.

Koch didn’t explicitly name the disorder because he didn’t want to engage in discussions about whether or not his portrayal of Paul was a crude caricature, or just plain wrong. Which is just a really fancy way of saying that he didn’t want to do any fucking research. He could have at least checked the Wikipedia page on autism spectrum disorders. He could have googled “Asperger’s and empathy” and figured out that he was completely off base in his random assertions. But he didn’t feel like it.

Aesthetically, my issue with what Koch has done is that it’s unrepentantly half-assed and that that laziness affects the quality of the book as a whole. The diagnosis just shows up, out of nowhere, on page 185. It doesn’t appear as part of an unveiling or unravelling carefully orchestrated by a brilliant writer. It just appears, completely unannounced, two thirds of the way into the book. It’s basically “Hey guys! Paul has non-Asperger’s Asperger’s now, ok?”

Now I’m not saying that there needs to be some sort of reverse Chekhovian rule along the lines of “If you’re going to diagnose somebody with an ASD on page 185, then you’re going to have to show some hand flapping in the first act,” but any relevant foreshadowing whatsoever in The Dinner would have been nice. There’s absolutely nothing in the entire book that even begins to hint at the diagnosis that Paul will eventually receive, though. The only even vaguely autistic issue that Paul has is a minor problem with stimuli. That also shows up on page 185, a few paragraphs before that neurologist with the German-sounding name is mentioned. And it’s never referenced again. Which, I suppose, is the problem with making up your own version of something and pretty blatantly alluding to it while not giving a shit if it’s accurate or not. It makes you look almost as incompetent at writing as you are at researching.

On a personal level, I am just so completely and utterly sick of this shit. Somehow, Asperger’s became the hot new thing for characters to almost have. Writers sure seem to love making up characters who embody all of the stereotypes of Asperger’s and high functioning autism, but they just hate having to deal with all of the research and the not being a petulant child about creative freedom and the potential repercussions that come with actually saying that a character is on the spectrum. And so they just don’t name it and they do whatever the hell they want and apparently that’s super cool.

Except that it’s not cool at all if you are a real human being who already has to deal with the stereotypes surrounding your disability. Because now you have to deal with all of the bullshit characters and stories that are based on bullshit stereotypes about your disability on top of dealing with the bullshit stereotypes about your disability. And the writers themselves don’t have to do much of anything, because they didn’t want to be tied down by facts, man! And so they’re not.

It’s not cool when the writers play around with Sheldon on The Big Bang Theory and make him embody every obvious autism trope ever but refrain from actually diagnosing him so that they can have all sorts of fun at the character’s expense without officially looking like ableist dicks. As much as I otherwise love Community and Abed, it’s not cool when they refrain from diagnosing him in the name of creative freedom, either.

I certainly sympathize with the desire to avoid conversations about Asperger’s and empathy and stereotypes and whether I’m getting it all wrong, because I have to have them all the time and they’re frequently infuriating. On the other hand, though, I have to have frequently infuriating conversations about Asperger’s and empathy and whether I’m getting it all wrong all the time, so I have no fucking sympathy for anyone who just chooses to bypass that step because they can and they wanna. Especially when it’s at my expense.

I don’t need any more white, ostensibly neurotypical men with more privelege in life and in art than I can ever hope to have exploiting me and people like me and then whining about how they shouldn’t have to deal with the consequences of exploiting me and people like me. If you want to trade in on the cultural cache that currently surrounds Asperger’s, then have the balls to admit it and face the discussion that comes with that, both positive and negative. And do a modicum of research, for fuck’s sake. I’m not saying that you have to nail every single symptom and character trait. I’m just saying that you should probably get at least one thing right.

Herman Koch doesn’t do that with The Dinner. He presents Paul as a man who really has no empathy and is prone to fits of brutal and uncontrollable violence. And then he randomly assigns him a disorder named after a German-sounding neurologist. Which can be treated with medication.

None of those things have anything to do with Asperger’s. I don’t even know where he got most of that shit from. Someone who learned all they know about Asperger’s from post-Newtown tweets would know more about AS than Koch appears to know.

So why shouldn’t he have to “engage in discussions of that kind?” Why shouldn’t people say that it’s a very crude caricature and that people with Asperger’s don’t behave as aggressively and unpredictably as this fictional character? It is and we don’t. The fact that he didn’t explicitly drop the A-bomb does nothing to distance us from that stigma. It doesn’t save us from having to talk about his stupid book.

And I am going to have to talk about his stupid book. People are going to ask me what I think about it. Some people are even going to ask me if I’m like Paul. Then I’m going to have to handle those awkward social situations with my imperfect social skills.

I’m going to have to carefully monitor my every move, lest I give someone the impression that I’m going to fantasize about bashing their face in and/or actually bash their face in just like Paul.

And I’m also going to have to bite my tongue and prevent myself from saying “Why would you read that tripe? I mean, if you want to laugh at rich people, rent The Discreet Charm of the Bourgeoisie. If you want viciously dark humour about horrible people, watch Nighty Night. And if you want a good story told by an unreliable narrator who slowly reveals his abominable actions, then read Lolita like a grown up” because I can’t be perpetuating that old nugget about people with Asperger’s being rude and pedantic, either.

In light of the horrific school shooting that left 27 dead in Newtown, Connecticut yesterday, a lot of people – both in the media and the populace at large – have been saying that it’s time to talk about mental illness.

I’m all for that. We do need to talk more openly and honestly about mental illness in all facets of life. But when we do have that talk, especially in relation to this tragedy, we need to be incredibly careful about the tone and the direction it takes. And I can’t say that I like where this particular conversation is going so far.

If we, as a society, are going to Talk About Mental Illness, can we talk about treatment and outreach? Can we try to eschew, or at least address, any preconceived notions of weakness or deviance? Can we not talk about bootstraps and positive attitudes? Can we do our very best to treat these afflictions like any physical disease? Can we attack the illness and not the patients?  Can we try to get past the stereotypes and prejudice attached to any and all mental illnesses?

And, if we’re currently too fucked up and traumatized and devastated and scared by this brutal situation to deal with all of that right now, then I hope we can at least try to keep the following two points in mind:

  1. Mental illness is a common comorbidity of Asperger’s Syndrome, for many reasons, but Asperger’s Sydrome is not a mental illness in of itself.
  2. While some people who suffer from mental illness, Asperger’s related or not, could possibly be ticking time bombs, all of us are vulnerable. And acting like we’re all potentially dangerous is only going to make us more so.

Even now, as a depressed and autistic woman, I can’t simply grieve with my fellow human beings. I can’t just be sad and confused; I also have to be defensive.

I have to read things about killer Adam Lanza like:

He was described as socially awkward and was known in high school as “intelligent, but nervous and fidgety, spitting his words out, as if having to speak up were painful.”

and

He was smart,” the insider said. “He was like one of these real brainiac computer kind of kids.”

and

“Adam Lanza has been a weird kid since we were 5 years old.”

and

“He was just a weird kid. He was a very quiet kid, a shy kid, maybe socially awkward,” Israel added.

and

He was a socially awkward kid,” Ms. Israel said. “He always had issues. He was kind of a loner. I don’t know who his friends were.”

AND

“[…]he just didn’t really connect with our high school, and didn’t really connect with our town.”

and know that any one of things can, or could have, at one time, been said about me.

I have to watch ostensibly respectable outlets like CBS and The New York Times report that Lanza maybe, kind of, sort of, might have had Asperger’s Syndrome and worry about what the inevitable onslaught of misinformation and stereotypes will mean for all of the awkward loners out there just like me who will, once again, have to add suspicion to list of issues that are keeping them isolated. And I have to watch people trot out the old gem about people with Asperger’s being absolutely incapable of feeling empathy (which is, at best, an oversimplification and, at worst, absolutely untrue) as some sort of explanation for what happened in Lanza’s head to make him capable of such unbelievable malice, cruelty and evil.

Even in this moment of collective grief, I am removed from the rest of society.

Isolation just like this is one of the reasons that so many people with Asperger’s Syndrome also suffer from anxiety, depression and other mental illnesses in the first place. None of what is happening right now is going to help us in any way. And it has the potential to make things worse.

I get the impulses behind the narrative that people are building around Lanza right now. Honestly, I do. People are trying to make some sense of a completely nonsensical event. It’s only human to want to find some meaning, context, or explanation in the face of such an incomprehensible act.

But the thing is, we’ll never find any of those things. We never do. The current confusion and sloppy speculation will eventually give way to hard facts and more clinical discussion of what caused Lanza to gun down so many people and to brutally murder such young children, but we’ll never actually have answers. We will never understand this tragedy and will never understand Adam Lanza. We can’t even ask him to explain himself.

What we can do is try to understand mental illness– Asperger’s related or not– a little better. We can talk to people who suffer from it, including people who have never fucking considered hurting anyone other than themselves, and try to understand what is happening to them. We can have a mental health talk that is as much, if not more, about helping people for its own sake as it is about stopping potentially dangerous people from hurting the innocent normal population.

Even if that doesn’t prevent the next mass murder or equally monstrous event on a major scale, it might just do a little to lessen the little tragedies that people who suffer from mental illness face every single day of our lives.

Stolen Luggage = Blahtism

December 10, 2012

Last week, I went to Las Vegas. My checked baggage was promptly stolen from the baggage carousel and I’ve been in a war with Delta ever since.

I’m planning on writing a more serious blog post about how much the whole experience messed me up as a person with Asperger’s Syndrome (my precious order was FUCKED) but, in the meantime, please enjoy this account on my other blog.