Photo by Tara Winstead: https://www.pexels.com/photo/black-usb-cable-on-white-and-red-box-7723388/
So, I never thought I’d be here—where my son’s caregivers have never actually seen a seizure, and need some information to proceed.
I never thought I’d be able to say that the seizures are so far apart—2 to 3 per year! and very short!—that people who work with him daily have NEVER seen one.
I’m grateful. I’m beyond relieved that his seizures are “mostly controlled.” From a time when he could have 100s per day to this is unbelievable.
I need to remember that gratitude, while I research the best educational materials to give them. Because, you see, they work with many disabled people, not just my boy. And all those individuals are—well, individual!
My son’s seizure types are not what most people think of when they hear the word. We’ve all been inundated with medical dramas on TV that show a-seizure-a-week; and they’re nearly all generalized tonic-clonic, what used to be called grand-mal seizures. (Although never get your info from TV dramas, they’re wrong in 99.9% of what they show!)
The other type peope think of is absence (or petit mal) seizures, where the person just stares and isn’t responsive.
There are many, many more seizure types, and related conditions.
ONE IN 26 PEOPLE HAVE A SEIZURE DISORDER.
That’s up from 1:100 when our boy was diagnosed, more than 25 years ago. It’s really unbelievable—what on earth is happening to cause this? That’s another whole conversation.
Today’s focus must be on finding or writing up information for my son’s aides. I don’t want to do it. I don’t want to think of epilepsy.
Because I’ll tell you a little secret? No matter how far apart the seizures are, the NEXT one is still a punch in the gut. Called “breakthrough” seizures when the condition is controlled, they’re always a surprise, and always a grief, even though we’re “used to it.”
And there’s always the lingering fear of SUDEP—Sudden Unexplained Death in Epilepsy Patients. It’s a risk for everyone (1:26, remember?) but even more so for those of us who are, or have been, diagnosed as “intractable” which just means that there’s no way to attain control. My boy is right on the border—depending on who you talk to—and he had uncontrolled, intractable epilepsy for nearly 20 years.
I know a number of Moms who have lost a child to SUDEP. It’s terrifying. And it’s always there, in the back of our minds.
So—with all this information, knowing that this condition is MORE FREQUENT than nearly any other disorder—WHY doesn’t everyone know about epilepsy? Why are we still not talking about it? Why is there still such a stigma? Why do we willfully ignore it? And concentrate on other things which are “easier” to talk about.
AND WHAT IS CAUSING THIS INCREASE, AND ROBBING OUR KIDS OF LIFE AND HOPE?
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