Epilepsy and My New Car
By: John Tweedy
Tags: Healing, Mediation, Disabilitystories, Mobility, Epilepsy

Five years ago last month, I woke up in the ER to a new world of epilepsy. This spring, I bought a new car.

That night of my first diagnosed seizure — I’d had others but didn’t know what they were — a cranky ER doc shrugged, “It’s probably idiopathic,” and kicked us out the door. My spouse and I, scared and confused, resented his flippancy, and do still. But he was right. Two years of intensive diagnostics were unable to identify a cause for my seizures. This is actually common. Epilepsy is sometimes undetectable on an MRI, and seizures can flash across the temporal lobe like summer sheet lightning without a raindrop in sight. A puzzle as old as Galen, epilepsy is still fundamentally defined the way the Greeks did: by what it does, rather than what it is. Unless there is a brain lesion, injury, or tumor that the docs can see, or some other illness of which seizures are a side-effect, then you’re basically dealing with a ghost.

What medicine offers now, if you’re fortunate, is the means to keep it at bay. For that I thank Zeus, in his forbearing thunder, and every god since. Not that finding effective treatment was easy. During those same two years of fruitless diagnosis, I took drug after draining drug. The seizures lessened, and I never again had one that blacked me out. But the ghost did not go away. Finally, I had a small joy-buzzer implanted in my chest that delivers a small shock to my vagus nerve where it crosses my larynx, every 2.5 minutes. I found a drug cocktail I could tolerate with efficacy at least north of placebo. And I took my diet to full-on paleo. So, for the past three years, this triple therapy of implant, drugs, and ketogens has gotten enough of a collar on Casper the Unfriendly that I am returned to the ranks of the outwardly able-bodied.

I say outwardly, because for many people who have it, epilepsy is also defined by the things we are not permitted to do. Two generations ago it was immeasurably worse: we were castrated and sterilized, locked in segregated wards of asylums lest we infect the insane. Now we are mostly prevented from getting conveniently around town. I couldn’t drive for those first two years, and it was an enormous education. A trip that takes 12 minutes by car takes 45 by foot and bus. A 45-minute trip across town drags to over 2 hours. That wasn’t the real learning, though. A local bus in a western city, stopping every two blocks through a working-class neighborhood, affords views you don’t get from the highway. And when you ride that bus for a year, watching the guys in winter bundled up for a workday they will spend outside, savoring the ride because it is the warmest they will be all day — when you watch underdressed moms and kids get on that bus after frigid waits in the blowing snow when the bus is 20 minutes late — when you you spend one of those waits yourself, after walking half an hour in dress shoes on an unplowed sidewalk, contemplating how you would have been able to get through those snowdrifts if you’d been in a wheelchair — then you come to think of driving, even walking, as indeed a privilege.

I’m not complaining — far from it. My time out of the driver’s seat turned out to be only a field trip. I’ve been released from driving restrictions for some time now, and because my job takes me to five counties every week, and because I can, I just bought a new hybrid sedan. I chose it for the mileage and the semi-autonomous safety gadgets. But what I guiltily love is the quiet. The world outside, that on a sidewalk or bus felt so fulsome to the senses, is now muted to a simulator. My music gently croons. The temperature hovers at an amniotic 70 degrees. Scenery — and thoughts — that used to linger and penetrate now barely register.

What remains is a sharpened sense of the contingency of living that epilepsy shocked me into five years ago. It suits my current work as a family court mediator: I move from one half-day block after another through successive worlds of domestic sorrow, as though between rocking compartments of a fast-moving train. The job is to be intensely present in each room, and then just as intensely to exhale in the corridor between. And pulling out the courthouse parking lot I pause to notice the guy sitting at the bus shelter where I used to wait, sometimes five minutes, sometimes an hour, for the local bus whose driver will spout off about libertarian politics to anyone who’ll listen, or just to the rearview mirror if nobody will. And I thank Zeus, and all the gods.