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I Am Not a Camel … but I Do Have Epilepsy

Maya Schenwar during a recent hospital visit. (Photo: Maya Schenwar)

On a warm, breezy afternoon in early September 2004, I was leaning back on my elbows on a grassy hill in Swarthmore, Pennsylvania, eating a cheese sandwich off a plastic tray, chatting with a couple of classmates. It was the beginning of my senior year of college, and we were already dizzy with happy anxiety. I turned my face upward and watched a white streak of sun shoot down across the canopy of the sky, dry grass prickling through my sandals.

But as I stared, that streak of sun kept coming, straight at me. I swallowed and couldn’t swallow; I was gulping at stars; I was outside my skin, watching my own face as it radiated, swirling galactically. And then I was lying flat and rolling backward, a million faces hanging over mine, staring down, their hands on my arms, my face. And then the faces slid together – there were only ten or seven or five faces, though I couldn’t catch hold of words like “ten” or “seven” or “five.”

“What’s your name?” a white-masked face said, into my eyes.

“I don’t know,” I said back. The “me” outside of myself was flailing: “Thinking of words is my thing!” that “me” thought. “Who am I if I can’t say words?”

But a few minutes later, the words rushed back. When the paramedics asked me what month it was and what country we were in, I got the answers right. My head was mine again, albeit aching. Yet the left temporal lobe of my brain had, apparently, reared up and announced its eccentricities, and it wouldn’t be shutting up anytime soon. My epilepsy had made its debut.

Fyodor Dostoevsky, who also had temporal lobe epilepsy, described his protagonist’s seizure experience in The Idiot:

He remembered that he always had one minute just before the epileptic fit when suddenly, in the midst of sadness, spiritual darkness and oppression, there seemed at moments a flash of light in his brain, and with extraordinary impetus, all his vital forces suddenly began working at their highest tension. The sense of life, the consciousness of self, were multiplied ten times at these moments, which passed like a flash of lightning. His mind and heart were flooded with extraordinary light…. But these moments, these flashes, were only the prelude of that final second in which the fit began.

Dostoevsky’s Prince Myshkin likened these “flashes” to “the highest form of existence” and “the acme of harmony and beauty.”

Well, my moment of oneness with the sun (my “aura,” as it’s called) may have been glorious, but the less-mystical reality of the seizure that hit me that September afternoon wasn’t harmonious or beautiful (especially when I looked at myself in the hospital mirror afterward and noticed I’d drooled all over my face and hands, and probably those of anyone who’d been helping me). Neither were the headache and shame that followed me around in the days afterward. I visited a string of neurologists over the next few years, lost my driving privileges intermittently, and was quickly prescribed a medication regimen that keeps my seizures in check most of the time.

When I do seize, unlike Dostoevsky, I do not tend to topple into radiant epiphany or collapse from the sheer force of my own ecstatic, perfect, devastating cosmic comprehension.

Instead, I blank out on a ratty couch in my old basement apartment in Chicago, or the shopping mall food court, or (eek!) emerging from a panel presentation at the Americans for Democratic Action convention, and wake up to find the paramedics touching my head and asking me questions like, “Who’s the president of the United States?” and “Do you know how to write your name?” Once in a while, I don’t know how to write my name.

And then there’s the other, less dramatic stuff – the “abnormal activity” buzzing around my brain on “normal” days. Since I had my first seizure, that “me” who floated outside myself and saw a separate version of reality has never really gone away. When I’m not concentrating hard on something – an engaging conversation, a good book, a challenging project, my fast-paced job, an adorable dog, an extremely delicious sandwich – I’m sometimes flooded with a feeling of “derealization.” The world around me appears like a dream, or a movie, or a secondhand vision: a matrix inside a matrix. Sometimes, the world wiggles.

At times, I appreciate my epilepsy, and my derealization. It provides me with a window into the fundamental unreality of existing structures, and allows me a unique vantage to envision the vast array of ways the world could be. My epilepsy consciousness has granted me new understandings, as it blurs my “normal” consciousness and transports me to an alternate realm.

However, it can also be scary. Two weeks ago, after a flare-up, I was admitted into the hospital for an extended video-monitored electroencephalogram (EEG) to measure my brain’s epileptiform activity. I was forbidden from going to the bathroom – or getting out of bed, for that matter – without paging a nurse. I couldn’t sleep at night under the camera’s constant glare, the electric nodes pulling at my hair and my neurons. I tried to work on my computer (you know, for this political news web site), but was interrupted by a series of doctors, residents and nurses asking me if I knew who the president of the United States was. At one point, I replied “Lindsay Lohan,” just for kicks. I went home with a glue-stained scalp, a report of “frequent spikes,” an increased medication dosage and few answers.

Why am I telling you all this?

First of all, I really wanted to share this glamour shot I took of myself in the hospital with my head tangled in wires (see above). I think the cyborg-Medusa look could be the next runway hit.

More importantly, though: For a long time, I didn’t want to tell anyone in my professional world about this unique feature of my brain. On the topics-that-are-fun-to-disclose-in-the-workplace-o-meter, epilepsy ranks somewhere between “I’ve been embezzling candy from the vending machine for the past 15 years” and “I am actually a camel.” I was worried about being abruptly viewed through an ableist lens, seen as suddenly less capable or smart, no longer the the unflappable leader.

In the 19th century (when Dostoevsky was pouring his own experiences into the character of Prince Myshkin) and into the early 20th, seizure-prone people were often categorized as “epileptic idiots,” and viewed as unable to function outside of an institution. More than a hundred years later, the stigma’s still around. A report last year in the journal Epilepsy and Behavior found that social media have become a breeding ground for derogatory comments about epilepsy: 41 percent of seizure-related tweets were deemed “offensive.” Although nowadays, fewer folks view seizures as possession by the devil or evil spirits (as many, many cultures have throughout history), the palpable discomfort around the topic of epilepsy is pervasive – and it has tangible effects. Until the 1970s, it was legal in the US to deny people with epilepsy access to theaters and restaurants, and in China and India, epilepsy’s still an accepted reason to annul a marriage. Workplace discrimination is prevalent, and people who have epilepsy tend to earn less money than those who don’t. Consequently, there’s a clear incentive to avoid telling anyone you’ve got epilepsy, if you can get away with it.

“There is an ongoing, significant embarrassment level about it,” the director of NYU’s Epilepsy Center told The New York Times, stating that “the feeling, for a lot of people, is that it does carry a lot worse stigma than a cancer.” It follows that most people with epilepsy don’t like to talk about their condition publicly, and that, in turn, perpetuates the stigma … which makes it a whole lot more difficult to raise money for research and lobby for equal rights.

So, now I am telling all of you I have epilepsy. (I have epilepsy!) If the director of an independent, progressive news organization in which everyone works from home can’t say it, then how the hell can we expect anyone else to?

The truth is, I am very, very, very, very, very, very, very, very, very lucky. I am lucky to have had a swarm of ridiculous-looking nodes glued to my head. I’m lucky to have had my insurance cover 75 percent of my brain tests, even though I’m still paying thousands of sadly-forked-over dollars. I’m lucky to have those dollars to pay, regardless of how sadly I’m forking them over. I’m unspeakably lucky to have insurance at all. I am lucky enough to be able to obtain the medications that (usually) keep me from seizing. I am lucky to be in a position where I can advocate for myself and largely retain agency, even as I bump up against the condescension and repression of the medical-industrial complex, and its emphasis on eliminating all cognitive difference.

Fifty million people in the world have epilepsy. For 30 percent of them, their seizures can’t be controlled by treatment. Beyond that, 75 percent of people in so-called “developing countries” do not have access to treatment in the first place.

In the United States alone, up to 50,000 people die from seizure-related causes every year.

This past fall, the acclaimed British medical journal The Lancet reported that the vast majority of epilepsy cases occur in low and middle-income countries where treatment is scarce, and called for a “global campaign against epilepsy.”

However, instead of a call to eliminate epilepsy, a better “global campaign” must start with each of us making our worlds more friendly to sharing our varied cognitive experiences publicly. That means, in part, becoming conscious of epilepsy as a very common, albeit near-silent, reality. It means including it in our disability advocacy efforts (and, while we’re at it, curbing the seizure jokes on Twitter).

It also means recognizing that people with epilepsy — particularly people of color with epilepsy — are disproportionately policed and incarcerated, and subject to involuntary hospitalization. It means advocating to end these practices, and to expand our understandings of cognitive experience, recognizing that non-normative cognitive experiences should not involuntarily be targeted for elimination. It means confronting the fact that low-income people with epilepsy often lack sufficient medical care, and that single-payer health care can begin to address those needs. And it means challenging the way in which the current medical system operates, in its tendencies to focus on a “cure” as opposed to supporting people in managing their seizures while engaging in self-determination.

Let the global campaign begin!

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