In Mark Danielewski’s House of Leaves, a couple buys a house to raise a family. Then the impossible appears in their living room: behind a door a dark hallway extending into their yard. They react with the stages of grief and a consuming desire for comprehension. Experts are summoned. Explorations mounted. But it morphs underfoot, confounding all efforts. It expands, contracts, mutates. They can’t even map it.
In 2007, we bought a house; soon after, we had our older son. At four months old, at play in the living room, he had his first seizure. Experts were summoned and explored his brain. Their conclusion: idiopathic epilepsy. Idios pathos, “a disease unto itself,” means cause unknown. A dark hallway.
As we reeled, it morphed, metastasized, not impossibly, certainly improbably: Cortical vision impairment (1 in 1,000); West syndrome (1 in 3,500); Lennox-Gastaut (1 in 3,900); hypotonic cerebral palsy (1 in 20,000). But it remains a mystery, and a shapeshifter. Ten years on, we’re no closer to even controlling his seizures. They’re ever changing, slipping away.
We did, recently, find out the cause: one mutated gene. A name: STXBP1 encephalopathy. There are a couple hundred cases, worldwide, ever. Still not impossible, but asymptotic to it. Researchers identified this disorder just ten years ago. Meaning this, only this: it’s been seen and named. That family saw their mystery, too, and named it. What’s that do? We, and our experts, still fumble in the dark. While beneath our feet, it shifts.
In 2007, we bought a house; soon after, we had our older son. At four months old, at play in the living room, he had his first seizure. Experts were summoned and explored his brain. Their conclusion: idiopathic epilepsy. Idios pathos, “a disease unto itself,” means cause unknown. A dark hallway.
As we reeled, it morphed, metastasized, not impossibly, certainly improbably: Cortical vision impairment (1 in 1,000); West syndrome (1 in 3,500); Lennox-Gastaut (1 in 3,900); hypotonic cerebral palsy (1 in 20,000). But it remains a mystery, and a shapeshifter. Ten years on, we’re no closer to even controlling his seizures. They’re ever changing, slipping away.
We did, recently, find out the cause: one mutated gene. A name: STXBP1 encephalopathy. There are a couple hundred cases, worldwide, ever. Still not impossible, but asymptotic to it. Researchers identified this disorder just ten years ago. Meaning this, only this: it’s been seen and named. That family saw their mystery, too, and named it. What’s that do? We, and our experts, still fumble in the dark. While beneath our feet, it shifts.
