Over the course of my diagnosis [’04-’05] I learned life-lessons by listening to adults and upholding pockets of resistance against those same people. All of life felt revolutionary in my narrow experience.
One adult to whom I listened was my neurologist. Mostly because he spoke more than he listened. He was my doctor for a relatively long time.
On his recommendation I took one medication, then abruptly switched to another. The new one was Keppra. At the time it was a part of the new generation of anti-convulsants with minimal side-effects. I took that medication and continued having seizures until I maxed out the Keppra at three grams a day.
I then had to add another to the mix. This one was one of the old-school drugs with all the gnarly side-effects and bad reputation. The dreaded Depakote.
I was especially against using this drug. It was one that my mother had taken. A neurologist prescribed it to treat her migraine headaches.
[Without bringing my mother up directly, I tried to tell my doctor about my aversion to taking this drug. She died one year ago at this point. My dad sat beside me listening. I found it hard to make the case.
In the end, I steeled myself (and my liver) to taking the drug. I remember walking out of his office that day. Neither of us said anything until we got in the car.
“I really don’t want to take depakote dad.”
“I know.” he said. “I don’t want you to have to take it either.”]
We would drive straight to the local pharmacy and pick up the prescription. In a few hours I would swallow the first pill.
I became dependent on depakote. With the doctor’s guidance I tried to ramp down off of the keppra. The depakote worked where the keppra seemed worthless and excessive.
Unfortunately, I had a seizure after I’d successfully gotten to the lowest and last dose of the Keppra. So, we began the march back up the ramp to maximum dosage. It had been about 2 years since we began the experiment.
We managed to dampen my seizures. The side-effect of depakote that I felt the most was exhaustion. No amount of rest could overcome it. So I just exhaustively wrote… in composition books… on a couple of typewriters… journals gifted to me… a computer keyboard…
At my peak of depakote and keppra delirium I was inspired, lucid, dreamy, grumpy, and drugged – I recorded it all as slashes of memory. Unaware that I was preserving a feeling.
I was at the absolute height of my initial dance with depakote and keppra. I’d gone six months without a seizure, thus regaining my driver’s license. After a few months of driving I had another seizure. In my sleep…
That morning I felt the familiar aches in my head. The hollow burning in my eye-sockets. Joints that cracked at any exertion. Dry mouth. So goddamned dry that my tongue felt a wooden deck sprinkled with pure, white Panama City Beach sand.
And then the pure white pain of biting a hole in my tongue…
I didn’t think this would happen again.*