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 or for the parents of kids with catastrophic epilepsies such as Dravet syndrome. 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.
Originally published last December.
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 or for the parents of kids with catastrophic epilepsies such as Dravet syndrome. 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.
Originally published last December.
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| photo by Michael Kolster |
I was never afraid flying in planes until I became a mother. And ever sense, every time the plane lifts off the ground, I am overwhelmed with emotion because I am often leaving behind someone who needs me on the ground to go high above the clouds where I really don't belong, and risk ever coming back. Being a mother has given my life a greater value, and the fear is a partial recognition of what could be lost.
ReplyDeleteThank you for sharing.
Oh wow I really needed to read this right now, feel the same way. Thank you for sharing and for your beautiful writing. For me there are gradations in the terror. The gray anxiety in between seizures, the acute terror during and right after and then bizarrely a sort of fleeting euphoria after it's over and I begin to slip into something that feels seizure free for a few days and I'm so grateful for every normal seeming moment. Then back to the anxiety because I know another one is coming. Never been in an abusive relationship but from what I've read seems like that. Except there is no getting out of this relationship with epilepsy because it comes all wrapped up in my favorite person in the world and he can't help it.
ReplyDeletebeautifully, horribly put. at least we are not alone in this. thank you for reaching out.
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