Wednesday, February 20, 2019

Was it the Moon?

Last night there was a gorgeous full moon. It shone brilliant white in the sky, the shadows of the earth clearly defined.  Did it have anything to do with Michael's seizure yesterday afternoon? Probably not. In 29 years we've never experienced the moon effect so I'm inclined to believe it was pure coincidence. I will take note of the appearance of the next full moon though just in case.

Yesterday's seizure occurred when Michael fell asleep while watching TV. It was the first lengthy seizure in over five weeks. Barry was beside the couch and I was in the kitchen so we were present throughout. I felt pretty certain it would not progress to an emergency situation  BUT  I cannot deny that piece of me that was bracing for the worst, imaging the prior disastrous seizures that occurred several years ago turning our lives upside down for well over a year.

The seizure lasted a minute and a half, perhaps two. It was an intense tonic ---I'll spare the description. I know better than to think Michael can hear my pleas. Yet still---Michael, Michael. And in my mind---stop, god dammit, stop! And -it stopped. He slept peacefully for an hour afterward and upon awakening announced he didn't remember laying down for a nap. We told him he'd had a seizure. He said he felt a little groggy but his recovery was quick enough that he enjoyed dinner, cleared the table and did the dishes as he usually does.

Anyone who reads this blog or knows us, is aware that we are very grateful that seizures haven't ALWAYS turned our lives upside down as they do to so many other families. We have had many merciful days, months and years without the menacing and dangerous tonic seizures that knock people off their feet and into whatever surface is surrounding them. Nevertheless, the epilepsy monster still visits us daily in the form of frequent, mostly brief seizures that occur during asleep--- the pesky nocturnal seizures that medical science has yet to be able to control. Those pesky seizures that with other factors place Michael in a category more likely to experience sudden death from epilepsy. SUDEP. I left out the word unexpected as we certainly are aware it is something that can occur and we live with that dread. But...we live. And most days we live life to its absolute fullest and don't think of the unthinkable as we've taken all the precautions available that Michael will agree to.

I'm thinking about the unthinkable today not because Michael had a seizure. I have a friend who's been incredibly upset this week because her friend's adult son died because of a seizure that couldn't be stopped. It has shaken my friend. I don't think she was aware of the significant risk of epilepsy. Now, sadly, she does.

We need to do better to prevent this tragic outcome. We need to do better.

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