fear (with video)

As I look into my son’s face I see fear creep across it like a shadow. What does he see? I ask myself. A monster? A storm? Does he hear sinister voices or sounds? Does he sense the indescribable smell of death the way I used to in dreams? Does his body panic, is he terrified, does he even know what fear is? By the look on Calvin’s face—the look that I saw last night and have seen a thousand miserable times—any or all of these could be true, and it breaks my heart.

This look of fear slowly washes over him, a rising tide of foreboding that begs his eyes to gaze upwards as if pleading in distress to some ogre. Terror appears to flood his cheeks and bulging eyes, his mouth agape as he reaches out for me as if I can save him. But I cannot. I pluck him out of his johnny-jump-up as his body stiffens and he lets out a dreadful, blood-curdling shriek. I lay him on his side on the couch as he begins to convulse, as his fingertips turn blue. Michael watches the clock and, for four minutes, I speak to Calvin reassuringly:
"You’re doing a good job, Calvin. I love you so much. It’s almost over, baby. You’re such a good boy. Mama and Daddy are right here. It’s almost over, sweetie.

But I’m never quite sure if it’s almost over. A few months ago the seizure was seven minutes long. They used to be as long as twenty. One was forty-five minutes—the wretched one when we thought we’d lose him, so were kissing him goodbye.

A young woman I sometimes correspond with recently wrote about her seizures, about their fearful nature creating the sense that she was being chased. She confirmed the worry I’ve had for Calvin:

"regardless of the challenges I am faced with in the real world, because of the physiological nature of my seizures, I am confident that I will never feel as afraid as I did during seizures. Despite a logical understanding that I was safe, eight times a month, I felt like I was going to die."

I can only hope, since Calvin usually has seizures when he gets sick, that perhaps he will outgrow them, or at the very least have fewer the older he gets. In the meantime I can only offer my boy some reassuring words that, though I wish they were true, I consciously doubt just as they pass over my whispering lips.


  1. All I can say is, "I know." "I know." Sometimes I make myself feel better, though, by thinking about the autonomic nervous system and the limbic system which govern those primitive "feelings" and impulses like fear. I think of it as just a physiological response and my projecting the judgement of "good" and "bad" onto those purely physical happenings in the brain is just that -- a projection and a judgement. A label, if you will. Now, this could be total bullshit, but it's what I do to cope.

  2. When I've had that feeling of fear and foreboding, knowing that it's neurotransmitters gone wild doesn't make it any less foreboding. The constant reassurance from a loved one is a great comfort. Keep it up, Mom. You're doing great.