Cesare has an art project assigned to him in school. He is to begin by drawing a picture of something he is afraid of. "But I'm not afraid of anything." We've had this conversation many times before.
Ces was diagnosed with Temporal Lobe Epilepsy (TLE) when he was six. But that's not when the epilepsy began. It began when he was 4, two weeks after the horror of 9/11. We don't live within toxic cloud reach of NYC but close enough that the trauma of that day crept right up the Hudson River to our community. One day, standing in the middle of his Kindergarten classroom, Cesare screamed- hid as if being chased. He didn't stop screaming for 18 months. Protective as we thought we had been, we assumed that some of the images, the descriptions of the attack had seeped into his world. Perhaps he was traumatized, suffering from anxiety. Who among us wasn't back then, in our own ways?
Cesare would wake up screaming in the middle of the night. So pervasive was his private terror that we all ended up in one room together. 1:00 am, 3:00 am, he'd startle awake shaking and screaming. Not a night terror, he could communicate just fine. But the things he said were frightening to me. He was hallucinating gorillas, monsters. I thought I was losing my son to mental illness.
I had never heard of Temporal Lobe Epilepsy nor, unfortunately, had the psychologist I engaged to help him. A good friend and a renowned psychologist, Dave was spending most of his days volunteering in neighborhoods near ground zero treating kids who had been transformed by what they saw. When he first met Ces, Dave believed that he was affected too. Worsening throughout therapy, Cesare was about to begin a course of anti anxiety meds when one night (as we four slept side by side in the boys' room) I witnessed Cesare's body tense up in his sleep. Within days we had the correct diagnosis. Dave, really an excellent psychologist, apologized to Cesare years later and pledged never again to treat a child with chronic fear without ordering an EEG.
Cesare would wake up screaming in the middle of the night. So pervasive was his private terror that we all ended up in one room together. 1:00 am, 3:00 am, he'd startle awake shaking and screaming. Not a night terror, he could communicate just fine. But the things he said were frightening to me. He was hallucinating gorillas, monsters. I thought I was losing my son to mental illness.
I had never heard of Temporal Lobe Epilepsy nor, unfortunately, had the psychologist I engaged to help him. A good friend and a renowned psychologist, Dave was spending most of his days volunteering in neighborhoods near ground zero treating kids who had been transformed by what they saw. When he first met Ces, Dave believed that he was affected too. Worsening throughout therapy, Cesare was about to begin a course of anti anxiety meds when one night (as we four slept side by side in the boys' room) I witnessed Cesare's body tense up in his sleep. Within days we had the correct diagnosis. Dave, really an excellent psychologist, apologized to Cesare years later and pledged never again to treat a child with chronic fear without ordering an EEG.
After a dozen years of seizing each of Cesare's events still begin with fear- that's his aura. Ces knows it as "artificial" fear. Epilepsy-manufactured-and-patented-fear. He knows no other fear. I've never seen him fearful: never startled or recoil from an image or a movie scene... nothing at all. And he doesn't fear epilepsy. Crazy as that is. He's accepted it.
His teacher prods, "Something Ces, draw something you fear". He can't. It's the epilepsy, stupid.
I wonder, is your son less stressed/worried/scared aboit his epilepsy than you? My son is certainly less concerned than me, although he is only 4. Despite his naivite, I do think I could take a page from his book.
ReplyDeleteThree cheers for your brave boy.
Thank you Beth! Yes, he is less concerned. I don't think he can step outside of his epilepsy to see it. He also has the gift of always being in the here and now....sometimes lingering there too long! I see the forest, he sees the trees.
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