I roamed the house in pitch-blackness, my eyes popped out like saucers thinking I might see my way around better that way. The power had gone off, and with it seemed to go all sound, save the drone of a neighbor’s generator.

I padded my way to Calvin’s room where I keep a mini flashlight atop his dresser for nightly use repositioning him in bed. I looked in through the netted canopy, saw him jack-knifed and uncovered, fast asleep. As I snuck downstairs to fish out matches and a lantern I thought about the tens of thousands of people stranded in the dark—for weeks now—in the wake of Hurricane Sandy. They don’t have heat they don’t have light they don’t have refrigeration they don’t have hot water and they don’t have computer access. I thought about the kids like Calvin and their parents, the elderly and the infirm who are living in cold, dark, damp, moldy, insecure homes, if they are lucky enough to still have a home at all.

I had spoken with the neurologist’s nurse at length earlier in the day. I had a lot of questions for her, some that I voiced, others that simply rattle around in my head on a continual basis:

Why is Calvin having so many seizures again? Was Saturday’s seizure because we reduced his Banzel? Are there withdrawal side effects? Was it a withdrawal seizure? Will he keep having more? Will the seizures level out after his body adjusts to the lower dose? Can we go up on his Keppra or his Clobazam? What about trying Vimpat? Will his appetite improve? Will his balance improve? Will his behavior improve? What kind of seizure was it ... it was so different ... so long. Should we have used the rectal Valium?

These are vexing questions that are etched into my mind, ones that I’ve asked before about other seizures, other drugs, and ones I’ll be asking again. But as I set the lantern on Calvin’s dresser, reached in and covered him up, I felt his warm skin and thought about the shivering masses in New York and New Jersey then asked myself, why are we so lucky? And as I crawled into bed I was thankful for all that we have, and certain that the power would come back on soon, before it got too chilly.

Associated Press


  1. I get all of this, and I bow my head to your gratitude. I also think about you, nearly every day (or night), as I think many of the exact same thoughts. And Calvin jack-knifes? So does Sophie!

  2. I'm so sorry to hear all you're going through. 'Hope that Tricia was able to help you out a bit. Your post reminds me of the conversations I had with her from the library between cups of coffee because I wasn't sleeping and work was only accumulating as I drove 3, 4 then 5 times from Vassar to home (Western Mass) to MGH to home and back to Vassar again. "But why am I having so many seizures again?....I know, but what is the likelihood that I'd loose some of my intellect if I had surgery?....Are you sure I wouldn't lose anything?....But they'd be cutting out five centimeters of my brain!" In the end it all comes down to the fact that epilepsy forces us to make decisions between the lesser of two evils. All the time. It's like the Democratic and Republican parties only the electoral college is in your body and you realize that the wars will rage on no matter which party wins. Sending all my best!