fear, dread and loathing

My son’s epilepsy has changed me, made me worrisome and fearful. In many ways it has shrunken me like a wool sweater in boiling water, shriveled my nerves into a tangled, crumpled mass of fibers. I sense that fear and dread in my posture, feel my shoulders cinch up around my neck as if I were pressing into a gale force wind. I feel my nerves bunch and knot around my bones. There’s a constant low drone in my head, my blood, like the nearly imperceptible but real buzz of a solitary bulb glaring in its socket.

I don’t remember being afraid much as a child, only at night on lonely walks down our unlit gravel lane headed home from Monica’s house. Fear quickened my steps and, as adrenaline fed fear, I’d launch into a full-out sprint round the bend in my driveway as if demons were swiping at my heels.

But I wasn’t afraid of scary movies, Hell or the end of the world. I wasn't afraid to sing solo in front of the entire school, wasn’t afraid to talk to strangers, go to the dentist, catch snakes and frogs, break up with boys, jump off of cliffs, swim past the breakers, sneak out of the house, drive ninety miles an hour, admit fault, endure pain, drop out of college, cold call, tell the truth, ask for help, backpack alone, explore foreign countries, converse with people whose language I didn’t speak, talk to the homeless, reveal my weaknesses, trust strangers, challenge authority, quit jobs, face adversity, eat food I didn't recognize, go to parties alone, move to new places or make new friends. I wasn’t afraid of any of it.

But epilepsy scares me. I’m in constant dread of my son’s next loathsome seizure, looking over my shoulder as if half expecting a lurking thug to whack me over the head. I jump at loud noises, cringe at Calvin’s odd behavior, flounder in angst and thrash in the obscure waters of antiepileptic drugs and their side effects that render my son a zombie-lunatic much of the time.

Because of epilepsy I never truly relax, and the fear, dread and loathing has, in some ways, become etched into my being, perhaps changed me forever. Though regrettable, I imagine this kind of fear and dread to be no less than a thousand-fold for the parents and families of the Sandy Hook Elementary School victims. And so I make my best effort to put things into perspective and to understand that my former state of total calm is little to have given up, at least for now; I still have my child and my child still has me, and for that I am eternally grateful, even if it's sometimes scary.

photo by Michael Kolster


  1. I don't remember being scared too much as a kid either through the seizures, the hallucinations, the uncertainty, the headaches, the doctors. Let me rephrase that. I was deathly afraid of it all, but still incredibly happy; I was a blissful little kid. I seized through violin lessons, softball practices, art camps, soccer games and beach days but I remember the activities more than the seizures. I think my parents underestimated my resiliency as a 7 and 8-year-old. The one thing that really separated my perception from my parents' was that my parents remembered the fear whereas I remembered all that surrounded the fear.

  2. Sophie was about twelve or so when I listened to a neuropsychologist at a conference I was working. The statistics she presented to us that day were astounding: the incidences for depression and anxiety in mother of children with EPILEPSY (particularly uncontrolled)far surpassed that of other mothers of kids with special healthcare needs. The siblings, particularly brothers, of those with epilepsy were at much higher risk for emotional disorders, depression and even suicide. After I heard her speak, I went up to my hotel room and lay on my back on the bed in a sort of stunned silence. It was actually quite affirming for me -- stunning, but affirming. I knew that it was HARD, harder than anyone realized, that I WAS coping. I don't know if this will mean the same to you, but it helped me -- and at year eighteen, it's still hard, but -- but what? There is much grace and comfort in acknowledgment of fear.

  3. eee, i did not know this stuff. makes sense. i feel the darkness descend upon me at times but cannot always name it. perhaps now i know for sure. xo

  4. I'll be posting a bit more about Dr. Caplan tomorrow because she wrote an article about the shootings in an academic blog --