A Longreads Member Exclusive: 
How the Light Gets In

Our latest Exclusive comes from Elissa Schappell, the author of Blueprints for Building Better Girls and Use Me, which was a finalist for the PEN/Hemingway Award. She's also a contributing editor to Vanity Fair, and she's co-founder and editor at large of Tin House, which is where she published "How the Light Gets In"—a story about a life changed by seizures.

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How the Light Gets InBy Elissa Schappell  | Tin House | Fall 2011 | 16 minutes (3,760 words)

Illustration by Emily Kihn
To say it is a curse would be to lie. This is what I wrote in my journal in 1993, when I was twenty-nine. The handwriting is tiny and childlike, recognizable to no one but me as the way I wrote only after suffering a temporal lobe seizure. The brain's temporal lobes, situated over each ear, swoop back from the temples like the wings on the thunder god's helmet, which is fitting, given the ominous auras that sometimes rumble through my brain before a seizure.
However, they don't always portend a terrible storm, and while "suffering" accurately depicts 99 percent of my seizures, 1 percent have been transcendent.


My first seizure occurs on Christmas Eve. I'm three. Earlier in the evening, a friend of my parents, dressed up as Santa Claus, dropped by to wish my baby sister and me a Merry Christmas. Later that night, my parents discover me on the floor beside my bed in the throes of a grand mal seizure.
I don't recall the seizure or anything else about that evening, but I do remember being in the hospital afterward. Indeed, my very first memory is of standing up and holding on to the railing in what seems to be a white crib, in what I perceive to be a long line of white cribs. I am looking to see if there are other children in the room. I'm afraid that I am the only one.
I am not diagnosed with epilepsy at this point, nor will be for many years. The doctors have no explanation for the convulsions. A fleeting fever? My parents, desperate for an answer, will hypothesize. "You were excited," they reason. "Perhaps overexcited about Christmas." For years after, my parents will fail to tell us when it's Christmas Eve.
Just to be safe, for the next eight years I am prescribed a teaspoonful of phenobarbital syrup to be taken before school and before bed. It's thick and red and glows hot in the back of my throat.

I get EEGs. The technician makes small dots in red pencil on my forehead. I am given a small cup of what tastes like flat Coca-Cola, which puts me to sleep. While my mother holds my hand, the doctors flash lights on the screen of my closed eyelids, hoping to stimulate a seizure. For the rest of the day I'll pick the bits of glue out of my hair from where they affixed the electrodes to my skull. My brain waves are irregular, but lots of people have irregular brain waves.
But what I don't tell anyone is that more than once, I have smelled oranges in the absence of oranges. I do not think this is meaningful. After all, when I close my eyes I can see the color blue. Why is being able to smell something that isn't there any different?

Temporal lobe epilepsy doesn't always manifest itself in a way an outsider would perceive as a seizure, which is why it's often hard to diagnose. Here are the things I cannot do, throughout my childhood or now: Register the passing of time—minutes, weeks, months. Make change or do math outside of adding and multiplication. I can do only the first two pages of the SAT.

Here is what I can do, then and now: Read, write and speak backwards. I put myself to sleep at night by running sentences backwards in my mind—woN I yal em nwod ot peels I yarp eht droL . . . I once assumed everyone could do this. Unfortunately, there is no section of the SAT that tests that. I can also write for long periods of time. I need to write. I have calluses on the thumb and ring finger of my right hand from holding my pencil for hours on end. Hypergraphia, often associated with temporal lobe epilepsy, is the overwhelming, conscious compulsion to write, and is aptly nicknamed the "midnight disease." Hypergraphic writing is typically autobiographical, religious, or philosophical in nature, however despite being deeply personal and meaningful to the writer, in the moment of creation neither the content nor the level of prose is of any concern. In hindsight, it is, I can attest, often cringingly bad.
It is thought that a good number of prolific writers, including Byron, Poe, Tennyson, and, most famously, Dostoevsky, may have had TLE. While Dostoevsky never wrote directly about his own epilepsy, he inflicted over thirty of his characters, including Prince Myshkin, hero of The Idiot, with the disorder. Like many people with TLE, Dostoyevsky had his first seizure as a child, at nine. He didn't see a recurrence until twenty-five. In my case I wouldn't have another seizure until I was twenty-six.

From Tin House, Fall 2011. Subscribe to the print edition of Tin House here.

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