I don't know if there is a way to write about one's pain without seeming to invite sympathy. I've been writing this blog for a year and in that time I've shared the experience of jumping hurdles and I've written about stumbling. Many of you have generously written back. When I am sorrowful, however, I have a difficult time writing. I don't want to be a victim, or sound like a victim. I don't want sympathy. I don't want to be that person. It is one reason I write here thinly anonymously: I want to purge without being identifiable. As I read back through the last year of my blog entries I grow weary listening to this mother who writes of nothing but epilepsy and its choke hold.
I'm a memoir junkie. I've read dozens and dozens of stories of struggle. Jeanette Walls, Augusten Burroughs, Mary Karr, Tobias Wolf, Charles Blow, Ishamael Baeh. In Left to Tell, Immaculee Ilibagiza writes of being hidden for ninety one days in a bathroom with seven other women to survive the Hutu's machetes in Rwanda. Martin Pistorius, in Ghost Boy, describes being locked in his body but fully conscious, dismissed by doctors as terminal and unreachable. Amanda Lindhout endured 460 days held captive in Somalia. I have no patience for the melodramatic writer. A clean dispassionate yet earnest account is what keeps me glued to the pages. Not all of the authors have "triumphed": some are slightly broken living slightly off-kilter lives.
I am not those writers. I haven't lived a life of abuse. I haven't been buried in my brain or underground or hid from terrorists. I feel as though after a year of writing about epilepsy, I should be moving on. Coping, surviving or whatever it is that people do when they resist sliding into a hole. More than driving a truck through our lives, these pages seem to reveal lives seated firmly in the truck. We occupy all of the available spaces but for the driver's seat where epilepsy is obtrusively maneuvering our course. I feel like epilepsy owns me, or at least a controlling share of me.
I haven't written in a few months. I've been in a dark place. Cesare hit another rough patch. I hit his seizures with everything we had. I drained our emergency supply of midazolam and slept with one hand on Cesare's chest. He ended up back in the hospital. They added a fourth anti-epileptic drug and a VNS. And though he is now more stable, I was drained. I felt like a victim and knew I'd sound like one if I wrote.
I've not completely shaken this feeling. I too often feel sorry for myself though I know I shouldn't or certainly shouldn't admit to it. Of course the irony is that I don't have epilepsy. I am healthy and privileged in many ways. I am, however, entangled in caregiver-itis and parent-itis. It's too blurry where I sit right now: where Cesare begins and I end.
Thank you, Beth and Paola, for reaching out recently and for being supportive and kind listeners. I hope to keep wrtiting but I want to write of more than epilepsy. I want to drain its power and find a way to distance myself from this persona. Perhaps I need a new blog for that.
