A murder of crows cawed and cackled outside my son’s bedroom window. I laid next to him and held him after his seizure, which happened shortly after waking. I had found him face down gurgling and twitching in an indigo puddle of drool.
The day, Sunday, felt like olden days, though not in a good way, because throughout it Calvin had several of what appeared to be complex partial seizures, the kind he'd sometimes have eight or ten times in a day eventually developing into status epilepticus, which always landed us in the pediatric intensive care unit via ambulance. These seizures, likely the result of the previous days’ benzodiazepine reduction, are semi-conscious episodes during which Calvin spaces out, his lips blanch, his breathing shallows and, at the end, he takes a deep breath and sighs.
Though these seizures usually only last between thirty and sixty seconds, they sap the energy out of him. Yesterday, he was so listless he let me cradle him for minutes at a time without squirming out of my grasp. With my arms around him, his head on my shoulder, I remembered a time before the epilepsy, before the psychoactive pharmaceutical drugs he’s taking caused him to become so hyperactive. I recalled a time when I had nursed a calm baby, when I had napped in the embrace of a calm boy, when I had played catch with a child who’d sit still, at least for a while, to receive a ball placed into his hands. Now, Calvin can’t stay still because of the paradoxical effects of the antiepileptic tranquilizer, clobazam, and the mood altering, agitating Keppra. Thankfully, the THCa cannabis oil seems to be helping some to soothe his soul.
As I laid awake next to my sleeping boy I reflected on a disturbing film that Michael and I had watched the night before. Under the Skin, the erotic and unnerving sci-fi thriller, had lived up to its name, its haunting images visiting me throughout the day as I cared for Calvin. In one scene, Scarlett Johansson, who plays an alien predator, lures a naked stranger into an inky pool from which there is no escape. Once submerged, the man appears able to breathe the thick liquid in which he is suspended. He expresses confusion and worry, looks as if perhaps he needs to retch. Nearby, he sees another man, bloated and thin-skinned, suspended in the silent blue. He reaches out to the man's swollen hand and, upon touching it, recoils as the puffy man unleashes a silent scream before bursting like a bubble into a mere ribbon of skin. The sickening image rolled around in my mind, its indigo fluid swirling in a mouth-watering river of nausea in which I found myself inert.
With my eyes closed tightly, I couldn't help but liken Calvin and myself to the two submerged figures, he and I suspended in the misery of our epileptic nightmare. I imagined our silent screams for help, Calvin's headaches and confusion, his inability to escape the seizures that engulf him and the drugs that bathe and bloat his brain. Under the weight of the wave there is nothing there for us to push off from. It feels as if we are immersed in a poison that seeps under our skin and lives there.
But at least for now, we are together and we can still breathe.
The day, Sunday, felt like olden days, though not in a good way, because throughout it Calvin had several of what appeared to be complex partial seizures, the kind he'd sometimes have eight or ten times in a day eventually developing into status epilepticus, which always landed us in the pediatric intensive care unit via ambulance. These seizures, likely the result of the previous days’ benzodiazepine reduction, are semi-conscious episodes during which Calvin spaces out, his lips blanch, his breathing shallows and, at the end, he takes a deep breath and sighs.
Though these seizures usually only last between thirty and sixty seconds, they sap the energy out of him. Yesterday, he was so listless he let me cradle him for minutes at a time without squirming out of my grasp. With my arms around him, his head on my shoulder, I remembered a time before the epilepsy, before the psychoactive pharmaceutical drugs he’s taking caused him to become so hyperactive. I recalled a time when I had nursed a calm baby, when I had napped in the embrace of a calm boy, when I had played catch with a child who’d sit still, at least for a while, to receive a ball placed into his hands. Now, Calvin can’t stay still because of the paradoxical effects of the antiepileptic tranquilizer, clobazam, and the mood altering, agitating Keppra. Thankfully, the THCa cannabis oil seems to be helping some to soothe his soul.
As I laid awake next to my sleeping boy I reflected on a disturbing film that Michael and I had watched the night before. Under the Skin, the erotic and unnerving sci-fi thriller, had lived up to its name, its haunting images visiting me throughout the day as I cared for Calvin. In one scene, Scarlett Johansson, who plays an alien predator, lures a naked stranger into an inky pool from which there is no escape. Once submerged, the man appears able to breathe the thick liquid in which he is suspended. He expresses confusion and worry, looks as if perhaps he needs to retch. Nearby, he sees another man, bloated and thin-skinned, suspended in the silent blue. He reaches out to the man's swollen hand and, upon touching it, recoils as the puffy man unleashes a silent scream before bursting like a bubble into a mere ribbon of skin. The sickening image rolled around in my mind, its indigo fluid swirling in a mouth-watering river of nausea in which I found myself inert.
With my eyes closed tightly, I couldn't help but liken Calvin and myself to the two submerged figures, he and I suspended in the misery of our epileptic nightmare. I imagined our silent screams for help, Calvin's headaches and confusion, his inability to escape the seizures that engulf him and the drugs that bathe and bloat his brain. Under the weight of the wave there is nothing there for us to push off from. It feels as if we are immersed in a poison that seeps under our skin and lives there.
But at least for now, we are together and we can still breathe.
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| photo by Michael Kolster |
Daniel has partial complex seizures that are just as you described Calvin's. One unusual thing that I tried years ago that seemed to help was castor oil packs. I've studied the Edgar Cayce material since I was a kid, and the packs are something he recommended for epilepsy. I would just warm it, massage it into his abdomen and cover with his diaper. He rarely has seizures anymore, and they stopped around that time. We also switched to T obamas then, but we were in a frantic phase with a lot of 911 calls and we're just getting ready to try the ketogenic diet. Just an FYI. I don't know which helped him more since they were done simultaneously, but his were at a scary point in 2001.
ReplyDeletecarolyn, what is T obamas?
DeleteDang autocorrect. I was hurrying and didn't catch that one. It was supposed to say Topamax!
ReplyDelete