stone cold silent

Halloween eve. I could tell by the tone of her voice that something was wrong. “Christy,” nurse Bebe said, “Calvin is spacing out way too long.” I dropped the knife into the kitchen sink and sped around the corner to the next room. Calvin was standing frozen like a statue in front of Bebe gazing blankly into nothingness. Even in the dim lamplight, the black night masking each window, his skin shed a ghostly glow. I knelt down and put my face near his, called his name, “Calvin.” No response. He was having a seizure. I picked his stiff little body up and laid him sideways on the couch. I stroked his hair, kissed his neck and called his name. For a moment, he tried to sit up, wrapped his arms around my neck and, with a look of foreboding as if to say mama make it stop, he kissed my nose. I hoped he might come out of it, but I was wrong. So I laid his rigid body back down and we watched him there, stone cold silent, and though his nurse counted off the minutes, time stood still.

Calvin doesn’t breathe during the first part of his seizures, his skin white as marble, his lips cold and grey. Compared to others, this one was slightly different—his body nearly motionless save a hint of silent trembling. At two or three minutes a few raspy gulps drew air into his lungs, the precious oxygen painting his lips pale rose by degrees. But he wasn’t with us, still trapped within the seizure’s opaque veil. Closing in on five minutes Calvin finally began moving and whimpering in a way that signals it is over, only this time he didn’t cry. We propped him up onto a pillow where we scrambled to give him his seizure meds before he fell asleep. In a daze, he obliged. What a good boy, my sweet, sweet Calvin.

It had only been seventeen days since his last seizure, which seems to be a new normal, a far cry from the forty-plus—even seventy-eight—day stints he enjoyed throughout the spring and summer. And we haven’t a clue as to why his body and brain have lost that improved threshold. It's maddening.

After we put Calvin to bed I felt myself sweating. I sat on the couch where we laid him during the seizure. Nausea washed over my gut and I felt a slight headache kicking in. With each passing seizure, each passing month, year, new medication, new dietary treatment, I feel hope slipping through my fingers like sand. We just can’t seem to get a foothold. No matter how hard we dig in the seizure-control keeps slipping away. It appears more and more likely as time goes by that—without a cure for epilepsy—Calvin will be sentenced to a life of repeated seizures, drugs and side effects that rob him of the chance to reach his full potential, which is most dispiriting to say the least.

Every Halloween I am reminded of past ones: of the one where a nurse mistakenly gave Calvin the wrong dose (too much) of seizure medicine, of the one when he suffered a bad seizure, of the one when he endured a painful circumcision meant to alleviate frequent urinary tract infections that spiked fevers triggering seizures, of the ones when he’d cry and scream so much that I’d greet trick-or-treaters with red eyes and black tears streaming down my face. I didn’t care if they saw, didn't care if it scared them, couldn't have helped it anyway.

But thankfully, Calvin seems to bounce back from these seizures like the little trooper that he is. He’s in school today wearing jeans adorned with glitter and spidery purple-black-orange Halloween patches and a skinny jack-o’-lantern shirt. Tonight, just like every Halloween, when the kids come knocking on my door asking for treats, Calvin will be in his pajamas ready for bed and I'll be the sorry witch that greets them with a bowl full of candy and, with any luck, a chocolatey grin on my face.

Halloween 2009


  1. Some words from someone who has had similar Halloweens: the one where I had a seizure in the middle of the road (thank God I live in a tiny little Western Mass town), the one where I dressed up as whirled peas (pronounced world peace) with a few of my friends and collected canned soup because I couldn't eat chocolate (I was on the low glycemic diet)... But here are my words of wisdom. Things are always worse when you can't control them: Hurricane Sandy, the incessant chirping of birds outside your window when all you want to do is go back to sleep, (in my case) the fires sweeping over Quito, seizures. I want to tell you this because I know that you aren't able to hear it from Calvin. Seizures were always worse for my mom than for me because I had some semblance of control. I felt the heat come over my face and the rising in my stomach before vision turned to inferno. Seizures were hell, but when you can't experience them yourself you can always imagine worse. Although I'm sure that the images of Calvin's seizures remain emblazoned on your eyelids during the brief moments of seizure freedom, remember that 17 days are exactly that: 17 days. Until my surgery, I never went more than two weeks without a seizure and people would always ask, "Do your seizures interrupt your schoolwork, violin-playing, unicycle-riding, fill-in-the-blank". And I'd kind of laugh. "No because I only spend a five or ten minutes a month seizing." This is not at all to diminish the pain of seizures--epilepsy was by far the hardest experience I have had in my life. It is only to say that Calvin and I are in a better space when seizing than you or my mom are able to see. I hope that that makes these times a little more bearable. Happy Halloween!

  2. dear julianna,
    you are so kind to write, and you do make me feel much better.
    much love and be safe,

  3. Julia,

    thanks for taking the time to try and easy my sisters pain. caron