When I was twenty-four, I finally graduated college. I decided the best plan for my future was to go to grad school, get my Master’s, and become a college instructor while I wrote my sure-to-be bestselling Great American Novel.
I applied to four schools: Houston, Syracuse, Iowa, and Miami University (OH). Syracuse was my first choice, being a lifelong resident of the city. Iowa was the dream, as it is for many aspiring writers. Houston was the quality school I applied to as a fallback. Miami was the last-ditch safety school.
Guess which one accepted me?
Actually, Miami was the only one to say yes, but even they wouldn’t offer me a graduate assistantship (teaching while taking courses) which meant I would have to transfer to the local K-B Toys and continue my life as a retail grunt if I wanted to be able to afford my education.
I couldn’t believe I hadn’t gotten in to any of my other schools. I was a good writer, hell, if you listened to some of my SUNY Oswego classmates, I was a great writer. I had worked long and hard on my application samples. I had my entire career and life past mapped out, right down to my eventual Oscar acceptance speech when my first movie script became a worldwide blockbuster.
Staring at three (and a half) rejection letters, all I could do was wonder “What now?”
Which is exactly what I’m doing right now.
On Friday, we finally got the word from Amelia’s neurologists at Strong Memorial Hospital. And that word was…
Exhaustion.
Um… what?
Exhaustion.
Thanks. I heard you the first time. But, um… what?
According to the doctors — who should know, right? — Amelia’s “events” (as they liked to refer to them, we prefer “meltdowns”) were not seizures or connected in any way to seizure activity in her brain.
They were, to quote “temper tantrums.”
Um… what?
Her EEG showed that she was still having discharges in her brain. Two kinds of them, as a matter of fact, but both were “benign” and in no way connected to what we were seeing.
What we were seeing, again according to the doctors, was the result of a lack of sleep. Apparently, Amelia is beyond tired — exhausted — and that has caused her erratic behavior, violent mood swings, death threats, punching, kicking, biting, lip smacking, spontaneously falling asleep, complaints of pain in her head, eyes, and stomach, twitches at night, memory lapses, and everything else.
Lack of sleep had turned my sweet six-year-old into a psychotic mess.
Um… yeah, never mind. You know what comes next.
We were told that we needed to have someone “teach” Amelia how to sleep (that someone being a “developmental psychologist” and how to sleep being “sleep hygiene”). We were told that the fact that she doesn’t fall asleep many nights until after 10 (though she’s in bed no later than eight-thirty) and gets up at six-forty-five for school had led to sleep deprivation and that, if we got her to bed at a more “appropriate” time, her behavioral issues would cease.
If not, then we could take her to a pediatric sleep clinic (ironically — or maybe not so much — like the one run by her chief neurologist).
But… but… but… we stammered — we put her to bed at an “appropriate” time. And she tosses and turns and twitches and smacks her lips or chews on her fingers and mumbles to herself and can’t fall asleep. What causes that.
She needs to “learn” to sleep. Or, maybe, the meds she was on for years for her seizures (the things she is apparently not having), which sedated her, have a side effect of causing insomnia when she isn’t on them anymore.
Yeah, that makes sense.
For weeks, we operated (and by operated, I mean survived) one on basic premise: when we went in for the monitoring, Amelia’s symptoms would be explained and we would have answers. We were prepared for those answers to be something we didn’t like.
She’s having seizures again and needs to be back on meds. She’s got something physically wrong with her brain and needs surgery. Even, it’s behavioral and she needs to be medicated for that.
But exhaustion? Really? Really?
To make matters worse, they never saw what we see. Every “event” was forced — we made Amelia have meltdowns, in the most unnatural and ridiculous ways. None of the events were anything approaching the level we see at home (despite the fact that they were pretty shocking to the nurses). Amelia’s eyes never got that “nobody’s home” look, she was so very guarded, and she - by her own admission — was doing everything she could to be good.
“If I’m a good girl, they’ll let me go home.”
To make matters even worse… they essentially told us that everything we had based the last four years on — that our daughter has epilepsy and was at constant risk of having seizures — was basically not true.
She’s just a tired and misbehaving little girl.
Less than 24 hours after leaving the hospital, Amelia had already had three nuclear level meltdowns, including chasing me around the house so she could keep punching me even after I walked away, and an event in her sleep.
And family keeps insisting this is all good news, and it cold be so much worse, and thank God she didn’t have any seizures while she was there.
And everything we thought we knew, everything we were certain of… is gone.
And all I can do is wonder… what now?
What now?
Related articles
- Day 1: The Waiting is the Hardest Part (finishsomething.wordpress.com)
- Day 3: Attrition (finishsomething.wordpress.com)
- Three Years: Our Journey with Epilepsy (finishsomething.wordpress.com)
Posted on January 22, 2012
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