names and faces

Written last August.

 

It’s been a while since I’ve woken up to the horrific sound of Calvin having a seizure. The shriek is hard to describe, and isn’t always the same from one seizure to the next except for the fact that it scares the holy crap out of me and I never—ever—get used to it. The sound he makes—that the seizure makes—is somewhere between a desperate cry for help and a blood-curdling scream. At one-thirty this morning, in Michael’s absence, that sound startled me awake. I threw off the covers and ran. Peering into Calvin’s bed through the netted safety canopy, my heart a steely piston knocking in my chest, I could see that he was still sleeping soundly when a little chortle escaped his lips. He had simply been dreaming.

Still, I found it difficult to fall back to sleep. Curled up in a ball I gazed out at the black pines silhouetted against a stone-gray sky. I breathed shallowly so that I could listen for Calvin, for the swooshing of his sheets, the telltale clicking and smacking of a partial seizure rolling into a tonic-clonic one—the kind I fear most—though I detected nothing but his own shallow breaths.

I started thinking about all of the children I know who suffer repeated seizures: of little Leland so soft and mild who, since a mosquito bite infected him with meningitis when he was just twelve days old, has been having several dozen seizures nearly every day; of my friend Emily’s beloved Ronan who is seizing all day and all night because of the wrath of Tay-Sachs disease; of Margot, with her dark lashes and curls whose seizures ebb and flow from day to day but never go away; of beautiful Savannah and Sophie, both in their late teens who—for years now—have been drowning in a slough of drugs and yet have had tens of thousands of seizures with no end in sight; of Lisbeth and Olivia and Sammy and Jack and Matthew and Luella and Elijah and Penny and Franny and Lily and Zach. I thought of Kevin, who drowned at the tender age of sixteen because of a seizure, and of the young sons who’ve died from SUDEP and of the countless other children whose parents have reached out and told me of the suffering their kids have needlessly endured at the hand of this malady called epilepsy. I know these parents live with the same nightmares—many much worse—as we do.

I fell asleep tumbling so many names and faces in dark circles and loops through my mind. And I awoke sleeping next to Calvin in his bed keenly aware that today, as in every other, I must tell the world about the scourge of epilepsy, simply because I can.

Warning: the video below may be difficult for some to watch, though I encourage you to do so, so that you better understand the plight of epilepsy on our children.