Easter, Epilepsy, and Trying to Cure a Broken Brain

Today is Easter. When I was a little girl, Easter meant a white dress, dinner at 2pm and featuring ham or something like that, and looking for hidden dyed hard-boiled eggs. There was always one hidden in the base of the ceramic little man — dwarf? troll? leprechaun? elf? It just looked like a miniature man with exaggerated craggy features. My mom made it in a class in the late ’60s, I think.

When I was old enough to understand the religious connotations/significance of the holiday, I mostly shrugged. Though I had a period of searching for religious/spiritual meaning like many people, my views on the Bible solidified after reading Live from Golgotha by Gore Vidal when I was 19, and I realized that if videocameras and DNA testing had been around in the biblical era, there would be no Christianity. It’s all about timing.

This isn’t a post about my religious beliefs, however. It’s about one specific Easter, and how broken brains suck.

Many people who follow this blog know that for about 5 years, from 2008 – 2013, my life centered on trying to help my brother’s kids recover from the degradation of their mother’s mental condition and the traumatic things that marked their childhoods as a result. The Easter right before I went to stay with them, my now-ex-sister-in-law gave one of her adolescent twin daughters an elaborate Easter basket filled with goodies. She gave the other a hard-boiled egg. In years that followed, I made the coolest Easter baskets possible, trying to make up for that slight.

This woman started as a ridiculously doting mother. Lived for her children to a degree I personally found vomit-inducing. Built her entire life on being a mom. Over time, her brain burned out from a combination of epileptic seizures and the hardcore drugs that were used to control her condition, and she went from a socially-acceptable doting mother to a bipolar/schizophrenic mess ranging from terror-inducing tormentor to pathetic blob.

My life went from urban web worker with a social life to suburban goodaunt/fakemom/niecerescuer on a day in spring 2008 when my brother called and asked me to come to Georgia immediately to take my oldest niece out of the house and bring her up to my mother’s in upstate New York (where she would be living to go to college that coming fall) because he’d been sleeping on the floor outside this niece’s bedroom at night, and was afraid his wife was going to kill their oldest daughter in the night.

I flew down immediately and took all three girls on a road trip up the east coast, stopping in DC for some educational tourism and with documents in my bag granting me the legal right to have the girls with me because everyone was pretty sure my then-still-sister-in-law would call the police and report me as a kidnapper. The details of her decline, as I learned them in dribs and drabs, were horrifying. That these girls were emotionally abused is unassailable. The fact that they couldn’t even remember a version of their mother who wasn’t this crazed monster, beyond sad. The oldest asked me if I’d ever seen her mother smile. “I’ve seen it in old pictures, but not in real life.” She wasn’t counting the evil leery grin that occasionally still made an appearance when her mom was being cruel.

How do you tell a teenage girl that not only had you seen her mother smile for many years, you’d seen her so in love with her daughter that nothing else in the world mattered, when now that girl is literally running away from her mother because her life depends on it? How do you reconcile the person before you, who retains almost nothing of who they once were, and can never hope to regain it because this isn’t just a mental illness, this is a brain that has been so physically degraded that it cannot be reclaimed? And if we are going to talk about God on this Easter Sunday, how does anyone believe (and oh, that sister-in-law was a massive believer) that an omniscient, omnipotent deity exists in love, yet allows these things to happen — nay, makes them happen? But I’ll leave that argument to Jaquith. :)

The other horrible effect of the epilepsy was that all three girls were exposed to high doses of barbiturates in the womb. Doctors stopped giving these drugs to pregnant epileptic women shortly after the twins were born, as studies started showing learning disorders, especially those that involved sensory-processing issues. For anyone who followed my attempts to get a decent education for the twins in spite of their various sensory-processing disorders, you know they drew the short straw on the in utero lottery.

So. Epilepsy. Unless you know an epileptic, chances are you don’t think much about it. But epilepsy is one of the most common neurological problems in the US, behind only migraines, strokes, and Alzheimer’s disease. More than 2 million people in the US currently have active epilepsy (vs one-off or periodic seizure activity). That’s more people than watched The Mindy Project last week (side note: that’s just wrong, that show is so funny). And for every person who has epilepsy, there are people around them who may be affected, like children who learn how to call 911 before they learn how to tie their shoes, or whose mothers’ brains get so fried that they lose all the maternal love and compassion that once ruled them. More religion: Is the ‘soul’ separate from the brain? And if there is a soul, is her soul fried, or trapped in a broken brain? Either way it’s ridiculously awful.

So. Epilepsy treatment. DRUGS. MOAR DRUGS. DRUGS THAT MAKE YOU A ZOMBIE. Then there’s surgery to split the brain in half, but there are cognitive and other side effects (I know this thing sets things on fire, but I have no idea what it’s called!). Then there are the clinical trials for microchips to help control seizures, kind of like pacemakers for the brain. But there’s no magic bullet, and mostly they keep using drugs.

The big problem with current medications is precisely that the medication is everywhere in the brain. It’s affecting virtually all the cells all the time.
Ivan Soltesz, quoted by NPR

This guy, Ivan Soltesz. Fancy research with light and mice and seizures and brains and trying to affect only the misfiring neurons when they’re going nuts rather than flooding all of the brain with treatment all the time. Ooh, do I like him.

It’s too late to undo the damage epilepsy caused in my ex-sister-in-law’s brain, or the damage that her post-damage condition caused her children, and that really sucks. Not being able to save someone is just plain terrible. But wow is it exciting to think that someone may finally be on the right track to making epilepsy nothing more than an inconvenience to be disclosed on a health form. Keep it up, Ivan!

2 thoughts on “Easter, Epilepsy, and Trying to Cure a Broken Brain

  1. This is really a sad story. I am sorry for the mother and the youngsters. I recently did a post on the effects of people with epilepsy being misunderstood and the effects of the medication and what it does to people. I worry every day if my husband (who has epilepsy) will end up with major neurological issues later in life. Good luck to you, the mother and the children. Here is a copy of the post.

    http://estoops.wordpress.com/2014/04/17/fight-the-power/

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